Transcript Palliative Care - Faculdade de Direito da UNL

Palliative Care is not about curing; it is about quality of life.
Middle Ages
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Religious orders established hospices at roads on the way
to religious shrines.
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Served as shelter to the pilgrims, many of whom were
travelling to the shrines in order to cure chronic illnesses.
XVI - XVIII Century
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Religious orders offered care to the sick and dying (mostly
in Ireland and England).
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Founder of the modern hospice
care.
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In 1957 she was a young physician
working at St. Joseph’s Hospice,
who started studying pain control in
patients with advanced cancer.
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Pioneered in the regular use of
opioid analgesics, given “by the
clock”.
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This experiment was seen with
scepticism until it started to show
improvements in the patients’
quality of life.
Dame Cicely Saunders
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In 1967 Doctor Saunders founded
St. Christopher’s Hospice in London
where she developed a modern
model of hospice care.
Multi-disciplinary approach.
Regular use of opioids to control
physical pain.
Careful attention to the social,
spiritual and psychological aspects.
1970s
• New Haven Hospice, Connecticut, began hospice home
care in the USA (1974).
• Hospices opened across the USA, usually emphasizing
home care.
1980s
• Patients with advanced AIDS started to receive hospice
care.
• The first children’s palliative care centre opened in
England.
• The Cancer Committee of the WHO created a work group
responsible for defining some policies regarding pain
management and hospice care (1982).
• Adoption of the term “palliative care” due to translation
difficulties.
“Palliative care is an approach that improves the quality of
life of patients and their families facing the problem
associated with life-threatening illness, through the
prevention and relief of suffering by means of early
identification and impeccable assessment and treatment of
pain and other problems, physical, psychosocial and
spiritual.” (WHO, 2002)
“Palliative care is the total care of patients whose disease is
no longer responsive to curative therapy. This type of care,
consisting of comfort measures, is meant to provide a relief
of pain and suffering so the patient can die with dignity.”
(Bonnie F. Fremgen, Medical Law and Ethics)
Incurable illness – curative
treatments are no longer efficient
Quality of life
Patients and their families
Relief of suffering
Pain
Other physical
symptoms
Psychosocial
problems
Die with dignity
Spiritual
problems
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It is of the most importance that the physicians are certain
that the disease is irreversible and incurable, in order to
withdraw the curative therapy and start palliative care.
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It must be provided an holistic care. This means that the
patient must be treated as a whole rather than just the
symptoms of the disease.
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The approach to the four problems can only be done by a
multidisciplinary team (physicians, nurses, social workers,
among others).
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Families must be supported and helped to face death as a
natural process.
When a patient is feeling pain, he/she may experience:
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Behaviour changes;
Diminished physical functions;
Lack of humour;
Decreased social interaction;
Feelings of impotence.
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Besides pain, patients often experience other reversible
physical symptoms. Therefore, these symptoms must be
controlled and treated.
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The physician has an obligation to apply an efficient
treatment, as long as the patient has so authorised.
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Some physical symptoms may be irreversible. In this
situation the physician should help the patient to accept
and adapt to his/hers new condition.
These problems are not treatable through medicine.
Patients, knowing that they are going to die, may feel
anguish, anxiety, abandonment and sadness due to various
factors:
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Fear of pain;
Loss of dignity;
Leaving loved ones and not knowing how they are going
to cope;
Financial issues.
Patients may also feel like a burden to their families,
especially when they are being cared at home.
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With death proximity, patients often reflect about their
lives. Some regret as they look back but most are proud of
what they have achieved.
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Many wonder about the meaning of life and of suffering.
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Spirituality must not be confused with religion.
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Patients going through spiritual suffering do not seek a
religious response. Normally, talking to a person of their
choice (relative, doctor, nurse, social worker) is helpful.
Most of the times patients do not need answers, they just
need to be heard by someone who is not judgemental.
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The information about the illness and the ways to manage
pain and other symptoms helps patients and their families
to fully understand the situation and to cope with it.
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Truth-telling and honesty are of central importance.
Patients need to rely on their physicians.
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A trusting relationship requires openness about what can
or cannot be achieved.
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Truth is a path that leads to autonomy, informed consent
and trust among the physician, the patient and his/hers
family.
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Hope must be maintained with reasonable expectations as
a way of transmitting security to the patient.
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Information in palliative care will be distressing and sad.
Inevitably, patients are approaching the end of their lives.
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Patients may be confused and weak due to their diseases
or/and the analgesics.
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Families play a central
confidentiality problems.
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Truth-telling raises ethical problems, such as:
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How much truth?
How must it be told?
When should it be told?
To whom should it be told?
role,
which
may
raise
• Communication
• Autonomy and decision making
• Advanced directives and proxy decision makers
• Theory of double effect
• Addiction to strong analgesics
• Medical futility
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Keeping the patient the central piece of the decision
making process is to respect his/hers autonomy.
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In order for the patient to make a decision he/she must be
aware of his/hers condition  importance of
communication.
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The patient must have capacity to understand the
therapeutics, so he/she can accept or deny the treatments.
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When this capacity is no longer existent, patients’ wishes
and autonomy should be respected through advanced
directives.
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Most honourable way to respect the patient’s wishes,
especially when he/she may lack communication skills or
decision making capacity.
Way to prevent unwished interventions.
Advance care planning, through a living will and
identification of a proxy decision maker, can enable the
patient’s wishes to be upheld even when the patient
decision making capacity has been lost.
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In Portugal, since last year, we have legislation about
advance directives.
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It is an unilateral written document on which a competent
person shares his/hers wishes regarding the accepted and
refused health treatments.
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The document is valid for a period of five years. It is
renewable for an equal period with the confirmation of will
of the patient.
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The living will can be revoked or modified by the patient
at all times.
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This document is also appropriate for the patient to
choose his/hers proxy decision-maker.
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In cases of severe pain, physicians may have to choose to
administrate strong analgesics which will possibly result on
the hastening of the dying process.
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These analgesics are also addictive. This is another reason
why physicians are reluctant on giving the patients such
medication.
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One of the main goals of palliative care is to diminish pain,
therefore physicians should not hesitate on giving strong
medication to their patients.
Administration of strong painkillers
Intended consequence
Unintended consequence
Diminishing
pain
Hastening
death
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The main concern should be about the dignity and wellbeing of the dying patient.
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The principle of double effect allows the use of aggressive
drugs even at the risk of hastening death  unintended
but accepted consequence.
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Medical futility is defined as an intervention that is
ineffective 99% of the time or as an intervention that will
not enable the achievement of the intended goal of the
intervention.
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Technology should not be used as an instrument which
its only aim is to delay death.
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Treatments that are not beneficial to the patient.
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Useless interventions
circumstances.
must
be
avoided
in
all
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Lei de Bases dos Cuidados Paliativos (Lei n.º 52/2012).
This law established the right to access palliative care,
creating the Rede Nacional de Cuidados Paliativos
(RNCP).
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Previously the palliative care were integrated in the
Rede Nacional de Cuidados Continuados.
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This was a big step towards the diffusion of the access to
palliative care throughout the country.
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Palliative care accepts death as a natural and inevitable
process.
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People have the right to live with dignity, even when
they are dying (death without suffering).