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LEARNING OBJECTIVES AND KEY WORDS
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Learning objective: To evaluate
the range of ethical dilemmas that Oncologists and their patients faced in
making decisions about cancer treatment
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Key words: Decision-making,
Palliative Care
CASE STUDY
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A 35 year old male develops Acute
Myeloid Leukemia. The leukemic cells have a normal Karyotype. He enters
complete remission after one cycle of Idarubicin and Cytarabine. Two
consolidation cycles were given.
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He has no siblings, and his
parents are not suitable as transplant donors. Nine months later he relapses,
and further chemotherapy was given, with a successful attainment of a second
complete remission.
·
You decide that a Matched
Unrelated Donor Transplant was indicated. He is a prisoner and is well-known
for his crimes. He is serving life imprisonment, without hope of parole. What
is the right thing to do?
WHY PALLIATIVE CARE
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Palliative care is resorted to when clinical evidence indicates that
there is no net benefit from life support or conventional treatment.
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A motivation for improving palliative care is the concept of good
death.
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Death in inevitable, much can be done to make the death process as
comfortable as possible.
·
The comfort may be physical involving pain relief and general tender
loving care. The comfort may also be psychological involving allaying anxieties
and fear of death among the terminally ill.
THE CONCEPT OF PLEASANT DEATH.. 1
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The tables could be turned around and the terminal illness can become a
pleasant moment.
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his is because terminal patients are resigned to their fate and are no
longer concerned about the routines of life and the anxieties of living and
achieving that prevented them before from thinking of loftier and nobler
objectives.
·
They realize that they cannot make any more material achievements
(wealth, power, and fame) nor can they have any major impact on the world and
its affairs.
THE CONCEPT OF PLEASANT DEATH.. 2
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They therefore have time to themselves for reassessing their past in an
objective and detached way and with no pressure or haste.
·
This is the time when nobler hitherto hidden human qualities to
surface. The terminally ill can forgive those who wronged them.
·
They can afford to be generous to their enemies. They can seek
forgiveness for any harm they caused others. And finally and above all they can
make peace with their creator.
NOBLE HUMAN QUALITIES
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The Qualities of patience, resilience, perseverance in facing pain and
certain death appear in the patient who has surrendered to Allah knowing that
the end is near.
·
A surrendering patient gets great reward from Allah because he stays
composed, calm, and reassured despite the poor disease prognosis.
·
This in a way is human victory against adversity and despair.
·
Only humans are able to maintain a calm state of mind in difficult
situations.
·
Animals react in an appropriate way to adversity by agitation and fear.
THE HEREAFTER
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The realization that earthly life is soon coming to an end opens the
mind to the alternative life of the hereafter.
·
In good health people hear about the hereafter and talk about it but
they are so busy in the pursuit of material pleasures and possessions that they
give it no thought.
·
Terminal illness provides an opportunity to think about the life in the
hereafter that can be better than life on earth for the righteous.
·
The prophet Muhammad like all prophets before him was given a choice
between life and death and voluntarily chose death.
GUIDING PRINCIPLES
ON TERMINAL CARE.. 1
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The following is a summary of guiding concepts on illness, death, cure,
and the etiquette with the terminally ill that form the basis for palliative
practice.
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Illness is not all negative; it has positive human aspects.
·
Death is not a terminal event; it is a transitional event from one state of
existence to a better one. The cure
of illness or death is in the hands of God; the healthcare givers' role is to
make ensure that the remaining lifetime has the highest quality possible.
GUIDING PRINCIPLES
ON TERMINAL CARE.. 2
·
Health care workers must provide a total
package to the terminally ill that addresses physical, psychological,
spiritual, and legal needs.
·
They should also be involved in the continuum of events before and
after death including the burial and mourning processes.
·
The physician bedside visit has both social and professional aspects
and should strengthen the patient psychologically.
GUIDING PRINCIPLES
ON TERMINAL CARE.. 3
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Spiritual preparation to face death involves repeating teachings of Islam
on the nature of disease, death, and the hereafter.
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Caregivers should guide and participate with the relatives and friends
through the processes of mourning which include preparation of the body for
burial, the burial itself and the post-burial period.
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This all-round concern and
participation of the caregivers with the patient and he relatives are a
demonstration of total care.
·
It comforts the living that when his or her turn comes somebody will
care.
DEVELOPMENT OF PALLIATIVE CARE.. 1
·
From a historical perspective, palliative care was not an important
concern of health care workers for several reasons. In the absence of effective
medical and surgical interventions, illnesses were rapidly fatal with little
time left for palliative care.
·
The demands on health resources were always so high that preference was
always given to the living and the terminally ill were neglected to their fate.
It was only the family members who undertook palliative care to the best of
their abilities.
·
It is the family-oriented palliative care that has created cultural
barriers to seeking professional palliative care. They reason that only the
family can care for the dying.
DEVELOPMENT OF PALLIATIVE CARE.. 1
·
Family-oriented palliative care is becoming difficult in today’s
industrialized society because the extended family has virtually disappeared
and the few members of the nuclear family are busy in their occupational
pursuits leaving nobody at home to care for the terminally ill.
·
Thus the need for professional care at freestanding hospices or
hospital-based hospices. A compromise has also been struck in some cases by
professional palliative care within the home.
RESOURCES FOR TERMINAL CARE..1
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A pertinent question may be asked: why expend resources in palliative
care when we know that the person is terminally ill? There are several ways of
justifying palliative care.
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It is part of respect for human dignity that a person dies in as comfortable
a status as possible especially without much pain.
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The relatives also want to feel that they have done all what they can
for the terminally ill and that they have mitigated the suffering of the last
moments.
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The terminally ill of the family may be wealthy and have the resources
to pay for expensive terminal care in which case the issue of limitation of
resources does not arise.
RESOURCES FOR TERMINAL CARE..2
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In an era of scarce resources, arguments have been made that the
elderly consume disproportionately high resources.
·
It may also be argued that the economic utility of the elderly is low.
This is most unethical. The elderly have as much right to health care resources
as are the young.
·
The difference may lie in the fact that the elderly may not benefit
from some measures in which case it is not useful to undertake them.
SITE OF PALLIATIVE CARE..1
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Palliative care can be in the home, in a hospice section of a hospital,
or in a freestanding hospice.
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Home care has the advantage that the patient feels at home in familiar
surroundings. The family also feels empowered to do something for their loved
one.
SITE OF PALLIATIVE CARE..2
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Hospital-based hospice care has the advantage of drawing upon
specialized resources and skills that are not easily available at home. It is
however too formal and the family members may not feel confortable.
·
Community gerontological services can also play a role. There are also
day care facilities that allow the
patient to receive specialist institutional care during the day and to be with
the family at night.
PALLIATIVE CARE TEAM
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Team-work and a multi-disciplinary approach is necessary.
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The role of physicians and nurses in hospice care includes
communication with the patient and the family.
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hey also must provide emotional support for the patient and the family.
MODALITIES OF CARE..1 : pain control
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Many patients suffer from pain; powerful analgesics are needed
including opiates.
·
The essential drugs for palliative care are non-opiates like
paracetamol, mild opiates like codeine, and strong opiates like morphine.
·
Usually pain relief starts with non-opiods like paracetamol or the
non-steroidal anti-inflammatory drugs (NSAID).
·
If the pain persists weak opiods are used. If it still persists strong
opiods are used.
MODALITIES OF CARE..2 spiritual, emotional,
psychological
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Spiritual preparation: Recitals and supplications are needed in addition to
pain control.
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Emotional and psychological support: The palliative care team must empower the patient, the carer, and the
family. It has to deal with family conflicts and confusions that arise due to
the stress of the illness. The family needs help to cope with the situation.
They need guidance to go through the process of grief and bereavement
successfully. Social support groups can also play a role.
MODALITIES OF CARE..3
communication
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Patients need information about their
condition.
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Physicians must provide information honestly
and tell the whole truth unless there is a legally-valid reason for not
disclosing some information.
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Information should not be given to patients
who have indicated they do not want to know. Patients should be helped to face
reality.
MODALITIES OF CARE..4
communication
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False optimism should be avoided.
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Patients should be told which information is
certain and which information has uncertainty. If the patient is competent no
information or discussion with the next of kin should be done without informed
consent.
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The physician should use his judgment in
communicating with the next of kin of incompetent patients.
MODALITIES OF CARE..5
Symptom management:
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Constipation, diarhoea, dysphagia, dyspepsia, nausea, vomiting, anemia,
cachexia, hypercalcemia, hiccups, pruritis, dypnoea, cough, hemoptysis,
incontinence, hematuria,
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depression, sadness, anxiety, confusion, weakness, convulsions.
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Sedatives and analgesics given for pain relief may give rise to a
double effect situation in which doses of analgesics sufficient to kill pain
may lead to respiratory depression.
MODALITIES OF CARE..5
Nutrition support:
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The wishes of the patient regarding food should be respected as much as
possible.
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In many case some form of artificial feeding will be necessary.
ETHICAL AND LEGAL
ISSUES
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Requests for assisted death should be
refused.
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Telling the whole truth to the patient
requires judgment and balancing benefits and harm.
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Privacy and confidentiality have to be
maintained.
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Caregivers must respect the patient’s
autonomy as long as he is competent.
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If the patient is not competent to make
decisions, his guardian, wali, will
make decisions that the caregivers are bound to respect.