PALLIATIVE CARE

The psychological aspects of

palliative care

Principles of palliative care

Karen Collis

Palliative care was defined by the WHO in 1990 as:

The active, total care of patients at a time when their disease is no
longer responsive to curative treatment, and when control of pain (or
other symptoms) and of psychological, social and spiritual problems
is paramount.

Palliative care complements existing health care and functions

in partnership with the multidisciplinary team. It should not be
considered as being merely concerned with decisions regarding
whether to treat or not, but with the appropriateness of a treatment. Palliative care is concerned with all chronic diseases and
many goals of palliative care are applicable in the initial stages
of any illness.
The principles of palliative care (Figure 1) are derived from the
primary objective of promoting the physical and psychological
well-being of the patient and his family. The facilitation of palliative care intervention incorporates three essential components:
psychosocial support
symptom control
teamwork and partnership.
The environment in which palliative care is required is one of
change and uncertainty.

Adapted from: World Health Organization. Technical report series 804.

Geneva: World Health Organization, 1990.

Spiritual needs may come to the fore only when the acuity of
suffering can no longer be confined to physical, psychological and
social arenas. Palliative care needs to facilitate exploration of the
patients spiritual awareness. This may be achieved by listening,
giving complete attention and creating an atmosphere in which
he/she feels safe and valued.
Spirituality must be viewed as a component of holistic care,
with the thought that a persons body, mind and spirit function as
an integral unit and any disturbance in one part affects the other.
Religious needs are based on faith, beliefs, liturgies and values,
and care is directed in this context; religion is a component of
spirituality.
A patient requiring palliative care may, as part of his adjustment, become introspective and reflective, searching for a meaning to his life in general, and his suffering in particular. This may
include distress from the past and the present, as well as a sense
of foreboding for the future (Figure 2).
The spiritual needs of the terminally ill patient can be easily
overlooked, focusing on the disease and symptom control whilst
the patient may be struggling with an illness that permeates his
body, mind and spirit. It may also impact on relationships, roles
and life-style, causing great anxiety.

Change
Once an illness has been diagnosed as having no cure, an integral
part of palliative care is helping the patient to adjust to a full
awareness of the situation.
Change is inevitable and unavoidable in both our personal and
professional lives, and can be both planned and unplanned. Change
alters the way we do things and the way in which we think about
things. Change is not always a single process. It is brought about
by a series of events that together produce change. This is due to
the different ways in which individuals respond to events creating
change. This reaction is unique to each individual, being influenced
by age, culture, religion and the psychological and spiritual core
of the person.

Anxiety
The physical condition of the patient may be influenced by his
psychological state, or vice versa. Both of these areas are of equal
importance with regard to palliative care, in order to maintain the
patients mental balance.
Anxiety is defined as a psychological and physiological response
to stress. It can be described as a feeling of uneasiness due to a
fear of the unknown, which occurs when people perceive a threat
to themselves either physically (body image) or psychologically
(self-esteem).

Spiritual well-being
Spirituality is a vital aspect of palliative care. It is an interrelationship between physical, psychological and social needs,
both influencing them and being influenced by them.

Karen Collis is a Clinical Nurse Specialist in Palliative Care at Harefield

Hospital, Middlesex, UK.

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Affirms life and regards dying as normal

Neither hastens nor postpones death
Perceives the patient and family as a unit
Creates a caring, comforting environment
Coordinates care
Provides relief from distressing symptoms
Maintains the independence of the patient for as long as
possible
Provides information (thereby empowering the patient)
Endeavours to reduce fear and anxiety
Promotes an atmosphere where an open and honest exchange
of views can take place
Helps the patient to come to terms with his impending death as
constructively as possible
Endeavours to alleviate isolation
Offers a support system to the family to help them cope during
the illness and in their bereavement

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experience mild anxiety in order that his perception is heightened.

A certain level of anxiety may even be advantageous to a patient
with a terminal disease, facilitating the processing of given information to adapt better to the consequences of the disease.

Possible causes of distress to the patient

Past
Regret
Guilt

Present
Anger
Sorrow
Loss

Future
Fear
Failure
Futility

Strategies can be used to minimize the effects on the patient by

a positive approach to the treatment of anxiety.
Complementary therapy is aimed at placing the patient in the
optimum position to deal with ill-health; the mind, spirit and emotions are thought to have great influence on the way the body is
motivated. For example, trials performed by Wilkinson in 1995
indicated that massage and aromatherapy were of benefit in palliative care (see FURTHER READING).
Educating the patient with regard to the various support
mechanisms, e.g. support groups, social services, religious representatives, psychologists, may help the patient to maintain his
anxiety at a level at which he can still function.
An assessment of the current level of the patients anxiety and
the coping strategies he employs will assist in the reduction and
control of anxiety levels (Figure 3).

Anxiety can be seen as an individual normal reaction to

environmental changes. It acts as a body defence mechanism,
allowing individuals to adapt to and counter threats.
Levels of anxiety may be classified as shown below.
Mild the patients awareness and alertness are increased, and
the patient recognizes tension as a warning sign. Such an environment is conducive to learning and information is retained.
Moderate learning must be directed, as there is a diminished
ability to perceive events accurately. The patients awareness is
decreased and focus-selective.
Severe the patient experiences incongruent thoughts and feelings with reduced capability of perceiving information and communicating details. Consequently learning cannot take place.
Panic learning cannot occur due to cognitive impairment.
The patient finds it hard to concentrate and organize thoughts
logically and may be easily distracted. Cognitive impairment
may be due to high levels of anxiety, which interfere with the
ability of the brain to process information. The more anxious
the patient is, the more likely he is to experience cognitive
impairment.

The family of the patient

The word family within the context of the situation may extend
to encompass close friends and significant others. The family of
the patient may also experience turmoil, whilst being a source of
comfort and support to him.
Each family has its own hierarchy, values, history, culture and
patterns of communication. When a family member has a lifethreatening illness, it affects the family. There may be disruption
to life-style, roles and relationships, and possibly conflict between
the wishes of the patient and those of the family. These differences
need to be reconciled in order that the patients psychosocial wellbeing is maintained (Figure 4).

This information would suggest that the patient would need to

Anxiety flowchart
Is the patient usually anxious?

Yes

May be due to personality/coping strategies

(consider support groups)

Yes

Consider restarting benzodiazepines

Yes

Discuss specific cause

No

Does the patient normally rely on

alcohol or benzodiazepines?
No
Is anxiety specific?
No

Is anxiety relieved?

Does the patient suffer from depression?

No

Yes
Consider referral to psychologist
and/or antidepressants

Consider lorazepam 1 mg p.r.n. or

diazepam 2 mg t.d.s.

No

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The adjustment of the family may have an influence on the

patients adjustment to the illness, and the realization that he is
dying.

The support from families, if undervalued by professionals

and the patient, may become routine care-providing. The family
may withdraw emotionally, as they may feel trapped, with their
whole life seeming to revolve around the patient. They may have
to deal with feelings of guilt when addressing their own needs.
This guilt could turn to resentment against the patient, who is the
focal point of the problem.
Support must be given to the family and, whilst we see the
patients needs as the priority, we must not neglect the family, or
judge them harshly if they need respite. A martyr to the cause,
especially if the cause is a lengthy one, may be unable to return
to a more normal life-style after the death.

Methods of coping by the family vary and can be categorized in

the following ways:
Waiting for death with a positive attitude and making the most
of precious time with family, friends and loved ones.
Waiting for death with a passive helplessness.
Overlooking the fact that the patient is becoming non-compliant and allowing a self-destructive attitude to prevail. This can
ultimately lead to increased anxiety for all the family, tending
to alienate the care teams and preventing them from giving the
appropriate help, advice and support.

Denial: not every patient will suffer outwardly, and some may deny
having any psychological problems, refusing to acknowledge the
terminal state of his health. This may cause isolation from sources
and agencies of support, including the family. There is a need to
identify the patients coping systems and evaluate whether they are
failing and, if they are, facilitate new methods of coping to prevent
a passive resignation from overwhelming the patient.

Immersion in the needs of the patient: family members can

become immersed in the needs of the patient. There are different
categories of immersion:
Freeing themselves from home tasks, work and caring for
children, and paying exclusive attention to the patient.
Freeing themselves from other commitments and re-assigning
the energy into a bond with the patient, such as filtering information and checking the physiological state of the patient.
Trading places, in which the family member takes many of the
traditional roles the patient performed prior to the illness.

Self -preservation mechanisms

Strategies
Two major strategies are used by patients.
Ego defence mechanisms use some distortion of reality and,
although useful for short-term problems, it is undesirable in the
long term (based on Freuds psychoanalytical theory of psychological preservation, i.e. manipulating the minds relationship to
a representation, not changing the represntation itself).
Coping mechanisms are conscious ways of trying to reduce
stress/anxiety in a positive and constructive way. This can

Family support: it is beneficial for the family to remain in contact

with friends and the wider family in order that they do not become
isolated when the death of the patient occurs.
If the patient is a pivotal member of the family unit (particularly
with regard to finance), the roles within the family may have to
be redefined.

Family care scheme

Do the family understand the situation?

No

Do we have patients permission to discuss his/her

illness with the family?

Yes

No

Would a family meeting be helpful to

summarize the situation?

Yes

Ensure that the patient has all the information

he/she needs and offer help to explain the illness
to the family in the future

Are they all happy with the amount of

information they have and are they in
agreement with the care plan?

No

Find out their level of understanding.

Explain intentions of care and give opportunity
for questions

Yes

Are they satisfied?

Yes
Offer further family meetings as required

No
May be appropriate to refer to other agencies
for family therapy

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Symptom control cycle

Assess patient

Monitor efficacy

Determine symptoms
and evaluate cause(s)

Treatment
Consider: Palliative care formulary,
radiotherapy, chemotherapy, specialist
palliative care services,
complementary therapies,
transcutaneous electrical stimulation,
breathlessness clinic, physiotherapy
5

include:
searching for information
problem solving
setting goals/objectives
recognizing feelings
seeking help from others.
Failure of coping mechanisms may be apparent from a change
in the patient, such as:
withdrawal
self-denigrating statements
inability to discuss and identify problems
a resignation of self to fate.
The family may also experience these changes. This breakdown
may have a significant effect on the quality of life for both the
patient and the family.

als. When people are given partial or misleading information they

often have to reach their own conclusions regarding the true state
of affairs, from what their symptoms are telling them and from
what is left unsaid.

Symptom control
Symptoms can be viewed as having two components:
cognitive: the actual perception of the discomfort
affective: the emotional response to that perception.
Symptom control is a continual process (Figure 5). Symptoms can
change constantly and increase in intensity as patients move along
the disease trajectory.
Palliative care interventions in difficult or distressing symptom-control situations may require the involvement of specialist
palliative care services, which may be offered at different levels
of care.
Consultancy services a one-off or time-limited involvement,
usually to advise on the management of a specific problem.
Short-term intervention the palliative care team may be
involved, but will be withdrawn once therapeutic goals have
been reached.
Full specialist palliative care referral can be made to a local
specialist palliative care team when symptoms are complex and
difficult to control, are distressing, or are progressing rapidly. u

Quality of life
Quality of life is extremely difficult to define. Historically, quality
of life has been associated purely with happiness and the absence
of pain. It is a subjective judgement, as it can be many different
things to different people. A man with terminal illness would
generally be perceived as having a poor quality of life, whereas
a healthy man who is unemployed and has a family to feed may
also be considered in the same light.
Palliative care needs to maintain the delicate balance between
realistic hope and denial of symptoms and death. A patient needs
to be encouraged to believe that:
symptoms can be controlled or alleviated
dignity can be maintained
he will be supported as he faces the challenge of dealing with
a crisis.
This balance can be achieved only in an atmosphere of honesty
and trust between patients, relatives and health care profession-

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FURTHER READING
Back I N. Palliative medicine handbook. 3rd edition. Cardiff: BPM Books,
2001.
Wilkinson S. Aromatherapy and massage in palliative care. Int J Palliat
Nurs 1995; 1: 2130.

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