weaknesses in these areas.
‰ Impressions from these family meetings must be
reviewed with the oncology treatment team to facilitate
the development of a comprehensive care plan.
Ongoing contact
‰ Frequently, in this context, information is not assimilated
entirely at the first time. Professionals should repeat the
messages at every opportunity, promoting open
discussions helping the patient and family members to
express their doubts, worries, fantasies, fears, etc.
‰ Contact and counselling (whenever possible) must be
maintained throughout the treatment period to provide
continuing guidance and support for the patient and the
whole family as they face new problems.
Informed consent
‰ Generally, parents must give signed informed consent to
initiate treatment, which may require them to hear
details that are extremely difficult to understand.
Through informed consent, the professional team should
share its knowledge in a sensitive and educational
manner that may guide the parents without being
coercive.
‰ Informed consent discussions have specific requirements
which include diagnosis, prognosis and procedural
information in language understandable to the lay person
in order for the family to be informed. Rather than think
of informed consent as an unrelated series of permission
slips, it may be more beneficial for content and continuity
to consider consent as a process that requires a
relationship with the caregivers that encourages ongoing
dialogue.
Refusal, non-compliance and abandonment of
treatment
Health-care team members must be trained to recognize at
the time of diagnosis those predictive psychosocial-economic
patterns that predispose patients to these problems so that
preventive measures can be instituted.
Prevention
‰ Insufficient and inadequate doctor, family and patient
(especially adolescents) dialogue, relationship, trust and
mutual information is one of the most important causes
of noncompliance.
‰ Other indicators predictive of a tendency toward
noncompliance are signs of family or parental
dysfunction, non-comprehension, low socioeconomic
status, and the failure to follow simple instructions and
initial appointments.
‰ The health-care team should remain open to discussion
when alternative medical treatments are proposed by
parents or patients. Careful attention should be paid to
the parents' expressed religious or cultural value system.
Often an alternative treatment does not significantly
interfere with the prescribed treatment and is in itself
medically harmless. Physicians should in such cases
encourage the parents to supplement conventional
therapies with their own cultural and/or religious
approaches.
Judicial Intervention (when all else fails)
‰ When parents refuse treatment or completely replace the
medical orientation with ineffectual alternative medicine,
it may be necessary to resort to legal proceedings to override
the parents at once and thus ensure that the best
interests of the patient are served.
Treatment initiation
The most common difficulty for the patient and their parents
during the treatment initiation phase of cancer treatment is
dealing with their own intense emotions and psychological
traumatization.
Common difficulties
‰ Once a course of treatment is specified, the family should
be given a "roadmap" outlining the steps in the treatment
protocol including a schedule of hospitalizations,
medications, outpatient visits and follow-up diagnostic
tests.
‰ Early treatment, side effects and possible complications
may suddenly make the patient feel and appear more ill
than prior to treatment.
‰ Family organization is especially challenged during this
time. Extremes changes occur in family roles and
responsibilities. Family separations and disruptions are
seen as the biggest change that occurs from the
perspective of healthy siblings.
Gaining control
‰ Once treatment is initiated, the patient and his parents
begin to assert some control over the cancer; families
increase their reliance on control and rules.
Ending treatment and survival
Children and families face another transition after cancer
treatment.
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