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SERIES 50,726

CPALLIATIVE CARE

family care
F. Munoz Cobosto, JM Espinosa Almendrob, J. Portillo Strempellcand MA Benitez del Rosariod

Introduction
The presence of a terminal illness in one of the
components of the family causes a crisis situation in
family stability1.2. In relation to this, each member of
the family will present a series of reactions that
influence family functioning and the state of well-
being or suffering of the affected person. The
interrelation of individual behaviors provokes a
situation of reaction and counter-reaction in the rest
Key points
• The family and the patient constitute the
binomial object of attention in palliative care.
Appropriate intervention on the family itself,
both its well-being and that of the person
ill.

•
of the family elements with a global positive or
negative result on the adaptation of the family to The family can present various alterations
the new situation. When adaptation is not achieved, that affect their ability to adapt to the crisis
dysfunctional behaviors appear that are the cause of caused by having one of their
suffering in the patient and in the family. That is why components affected by a terminal
the exercise of palliative care is inescapably focused illness.
on the care of the patient and the family with the
aim of reducing the level of suffering of all the
• The alteration of family communication is
frequent, and its maximum expression is the
people involved.1-5. conspiracy of silence. it hides
This article will address the assessment of the continuously to the patient the reality of
family, its reactions and the interventions that can his situation and prognosis.

•
be carried out from the first level of health to
The care of the patient with a terminal illness
improve the family's adaptation to the experience it
ends when their relatives have adequately
faces.
elaborated the mourning. Adequate attention
to it is essential to be able to intervene in a
The family approach: general aspects
timely manner, avoiding
It should be done with the understanding that the
complications.
family can present various alterations (Table 1). To
detect these reactions, a systematic assessment based
on knowledge of the genogram and life cycle, family
functioning, previous family experience in similar
situations or crises of various kinds, and the available
human and material support resources is required.5-7. Family assessment should be applied systematically
to detect alterations early and try to modify
inappropriate consequences.

Functioning patterns and family

Family Physicians.
adaptation
toWhite Door Health Center. Malaga. Spain.
Faced with the crisis caused by terminal illness, families
bEl Palo Health Center. Malaga. Spain.
have difficulties in making their habits more flexible
cHouse of the Sea. Estepona (Málaga). Spain.
and perpetuate previous patterns of functioning that
dHead of the Palliative Care Section of CH La Candelaria. Tenerife.
Spain. may be ineffective in adapting to the new situation5,7,8.
These patterns (based on family history, values and
Correspondence:
Miguel Angel Benitez del rules) can hinder intra-family communication, task
Rosario. Post Office 10521.
Santa Cruz of Tenerife. Spain. Email:
distribution or role conflict, among others. The
mabenitez@comtf.es intervention of professionals in this situation should be
aimed at making the operation more flexible.

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 Muñoz Cobos F, Espinosa Almendro JM, Portillo Strempell J and Benítez del Rosario MA.
family care SERIES

TABLE Alterations that can be suffered by the different the conspiracy of silence
1 family spheres It is a frequent alteration of family communication as a
Symptoms due to altered family functioning result of cultural patterns that seek to protect the patient
Rigid patterns of operation from the suffering derived from knowing reality.5,6,11,12. It
is the materialization in the family of an evasive social
Alterations in the family life cycle
attitude towards death; the subject is avoided, since not
Overprotection of the patient
talking about death means that it does not exist in a
caregiver syndrome determined and concrete way in that situation. The
Communication dependent symptoms presence of the pact of silence causes an important
conspiracy of silence difficulty in the family's relationship, and in its relationship
Emotional symptoms in the family with the professionals (it is tense due to the need for
Denial
continuous self-control to avoid giving information).
The "pact or conspiracy of silence" consists of excluding
Anger
the nature and development of the disease as an element
fears
of analysis due to pressure from the family to avoid
affective ambivalence
informing the patient. It provokes a situation in which
Family symptoms of the social sphere relatives, the patient and health professionals can talk
Social isolation about day to day, about the most immediate events, but in
family claudication no case are they authorized to question or comment on
Family symptoms in grief
the name of the disease or its prognosis; It is to pretend
that life goes on normally.
pathological grief
The modification of the conspiracy of silence to improve
intrafamily communication patterns requires specific,
continuous and delicate interventions. The abrupt
family, for which it is necessary to know what the imposition on the family of the professional need to break
family is like, its rules and its ability to adapt to new the pact of silence in relation to ethical and legal
situations according to previous experiences5,6,9. From imperatives does not always produce the desired result,
a practical point of view, the intervention will include caregivers do not change their attitude and the patient-
information on the patient's situation, the family-professional therapeutic pact can be altered. On
consequences of functioning considered abnormal, the other hand, the components of the family have to
and the possibilities of acquiring other modes of clearly accept the openness of communication, to avoid
functioning with the benefits that could derive from it the additional suffering derived from being subjected to a
(Table 2). The impact of the interruption that the level of communication to which they are not accustomed.
terminal illness produces in the execution of the tasks This suffering can persist over time, making it difficult to
inherent to the stage of the life cycle in which the grieve.
family finds itself should be highlighted in the The family must be informed of the importance of
interventions. It is especially relevant that the different approaching the patient's internal world in order to
family components understand the importance of discover their fears and concerns, and that it cannot be
avoiding "an absolute and paralyzing invasion" of done if there are aspects that cannot be treated, such as
family functioning due to the disease5,9,10. diagnosis and prognosis. Family reticence can be relaxed

TABLE Aspects that should be promoted-favored by the intervention of professionals

two in family care

Effective communication within the family

The progressive transition towards the new roles that must be developed

The distribution of tasks

Non-annulment of the patient's capacities. Promote your self-care

Recognition of the importance of the primary family caregiver

Identification and execution of activities that reduce caregiver burden

Maintenance of the family routine: reduce the alteration caused by the disease

Reception of internal social support (support provided by its members)

Reception of external support to the family. Avoid social isolation

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 Muñoz Cobos F, Espinosa Almendro JM, Portillo Strempell J and Benítez del Rosario
SERIES MA. family care
with repeated interventions that show the
professional's commitment to care and success in
controlling physical suffering.
When family behavior cannot be relaxed and the
patient insists on knowing the situation, the
professional must decide whether to carry out a
confrontation between the patient and the family
(encourage the patient to show his suspicions to the
family and ask the latter) or inform him. If the option
chosen is the latter, the usefulness of giving the
information gradually should be considered, not in a
single act, hoping that the patient ends up being asked
and disproves the family idea about what he knows or
suspects, about his wishes and about his reactions.
before the knowledge of reality. Sometimes the pact of
silence is reversed in the sense that it is the patient
who does not want to talk to his family about the
disease and her feelings. In this case,
We cannot lose sight of the fact that we are immersed in a
sociocultural environment in which an attitude of continually
avoiding the subject of death and suffering predominates. In
other organizations or societies the situation and
interventions may be different. Thus, it must be considered
that there is no single formula, and that it must be adapted to
each situation.11,13,14.
Primary Caregiver Care
The primary or main family caregiver is subjected to a
physical and psycho-affective load derived from the
responsibilities and activities of care, from the continuous
experience of the patient's suffering, from their own
feelings regarding the loss and from what this represents
for their future life. . These burdens, more or less intense,
constitute the caregiver's syndrome, in which disorders
such as anxiety and depression are highly prevalent and
can cause a situation of family claudication14-18.
The primary caregiver's assessment should be exquisite in
order to detect the situation of overload and be able to
influence it. It is especially important to intervene when
the main caregiver is an elderly person, or a family
element whose opinions are not considered important by
others.6. In the first case, the physical overload caused by
attention is greater and the psycho-affective overload
caused by decision-making may be excessive for their
personal resources, reduced by age and the wear and tear
of previous life. In the second case, there may be an
ambivalent situation between the roles and the execution
of the tasks (it is used to care for and clean, not to decide)
that profoundly affects the self-esteem of the main
caregiver.
The work with the main caregiver must include an
action on him and another on the rest of the family. In
the first case, information will be provided on what
578 | Primary Care 2002. November 30. 30 (9): 576-680 |
care, the resolution of their doubts about the disease
and their activity as a caregiver (positively reinforcing
their role), and about the need to share care activities
with other family members or existing social resources.
With the rest of the family, the work will be aimed at
highlighting the role of the main caregiver, the need to
distribute tasks (inherent in care and the stage of the
life cycle in which the family finds itself) and favor the
appearance of "moments of respite and rest” for all
caregivers. Rest should be understood as necessary to
continue caring with quality and not to live with
feelings of guilt due to mistaken ideas of "selfish
abandonment" of the loved one.
Emotional symptoms in the family
The families of people with a terminal illness may present
various emotional reactions that make their internal
relationship or relationship with professionals difficult.
6,12,19. Of these, denial, anger, fear, affective ambivalence
and depression stand out due to their frequency and
impact.
Denial can be expressed with attitudes of
rationalization, displacement, minimization or self-
blame to hide the reality of the facts. Although it is
recommended that the patient's attitudes of denial
should not be confronted, the family's denial should be
resolved gently so that it comes into contact with
reality and its expectations are appropriate and do not
hinder patient care.
Anger or rage is not in itself maladaptive, it becomes a
symptom when it is the preponderant and fixed feeling
that dominates family life ("prolonged rage"). The
premise of intervention against family anger is not to
fall into the trap of responding aggressively. Clinical
interview techniques aimed at defusing anger
(recognition of limitations, negotiation, goal
redirection) are especially useful.
In the family of the terminally ill, and especially of the
primary caregiver, different fears may be present
TABLE family fears
3 more common
That the patient will not receive adequate care
talk about the disease
Let the patient guess that he is dying
That they themselves betray the pact of silence
To be alone with the patient at the time of death
To not be present when I die
Not knowing how to identify death
To solitude after death
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 Muñoz Cobos F, Espinosa Almendro JM, Portillo Strempell J and Benítez del Rosario MA.
throughout the entire process (table 3)6. The recommended
strategies to redirect fears are: normalization, that is,
explaining that being afraid is "normal" in these
circumstances, that their fears usually coincide with those of
the patient and that they are even necessary to overcome
with dignity the stage they are experiencing , the resolution of
existing doubts about the disease, its evolution and care, and
continued support. Nothing reassures the fearful family more
than knowing that they can count on healthcare professionals
whenever they need them.
A certain degree of affective ambivalence is usually
present in relatives, causing them more or less conflict.
This consists of the simultaneous presence of
contradictory feelings regarding the patient (those that
one should have for social, cultural and religious
reasons and those that in fact one has) such as, for
example, "may he get better" and "may he die now". It
is a symptom that is systematically abolished by the
family for being morally unacceptable, and that can be
expressed by increasing the caregiver's tension,
causing crises of anxiety, depression or episodic
reactions of anger. In the approach to affective
ambivalence, the interventions used to control fear are
useful, that is, the normalization of the situation
without making value judgments.
family claudication
Family claudication is an expression of the high
affective overload to which the family is subjected and
basically consists of a strong emotional crisis with a
surrender regarding care2,3,6. When this happens, the
family repeatedly requests the admission of the patient
to transfer the responsibility and execution of care to
the health or socio-health system. Among its triggers,
the persistence of unresolved doubts and fears and the
caregiver's physical exhaustion stand out. Family
claudication can be episodic-temporary or definitive
(the latter can be an expression of previous family
conflicts that lead caregivers to abandon the patient, or
an expression of a real impossibility of home care due
to lack of resources). The search for health care with
the patient's request for admission due to lack of
control of her physical symptoms should not be
considered family claudication; It is the logical
response to the justified desire to remedy the suffering
of the loved one.
The ideal intervention on familial claudication is
prevention. The complete relief of the patient's
suffering, the continued support of the professionals
and the sharing of decision-making responsibilities
contribute to reducing affective overload. Once it
appears, lameness must be intervened, trying to
recover control of care by the family. The attitude of
the professional should be one of understanding and
exoneration, in order to later plan the new stage
91
family care SERIES
of home care. Undoubtedly, a break should be
provided to the family, while their readjustment takes
place, with a hospital admission.
Caring for family after loss
After the death of the patient, the family needs
supervision and support in the elaboration of the
mourning20.21. The intervention should be focused on a
relationship of continued help and advice, without falling
into the sanitization of the process. Early detection of the
development of the different forms of pathological grief is
especially important2,6,21. The prior involvement of
primary care professionals in patient and family care and
the longitudinal nature of the care they provide are key
factors that allow support for the family during the
grieving process.
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