FAMILY ROLES AND NEEDS IN PALLIATIVE CARE

SCHOOL OF NURSING--FACULTY OF MEDICINE

UDAYANA UNIVERSITY
Made Rini Damayanti S
 PREVIEW
• A TREND → people with a terminal illness to remain at home →
most deaths occur in hospital, but much of the dying phase occurs
within the home.

• Care within the home → relies primarily on a family member or

friend with the input offered by professional palliative care
services.

• Cancer treatment → curative or palliative intent → a demanding

period for the patient and family both physically and emotionally.

• Major sources of sufferings → disabilities and symptom progression

→ facing death → anticipatory grief.
 Family and family caregivers
• “Family” → encompasses than biological relatives or
people related by marriage → can include those
identified by patients as key people in their lives.

• The term “family caregiver” is often used for an

important relative or friend who provides
psychosocial and/or physical assistance to a patient
needing palliative care.
The roles of families in home-based palliative care
• The focus of home-based palliative care by families has
changed from a simple caring role to more complex care,
often involving advanced skills such as opioid
administration and symptom management.

• The level of responsibility of a family caregiver depends on

the physical and psychosocial needs of the patient and the
dynamics of the relationship between caregiver and
patient.

• They have multiple roles, which are potentially conflicting.

They can be facilitator or a barrier during the care process.
The responsibilities of a family caregiver may
encompass some or all of the following:
• Personal care (hygiene, feeding);
• Domestic care (cleaning, meal preparation);
• Auxiliary care (shopping, transportation);
• Social care (informal counselling, emotional support,
conversing);
• Nursing care (administering medication, changing
catheters);
• Planning care (establishing and coordinating support
for the patient).
Impact on families caring for a dying relative at home
• For many families, the diagnosis of a life-threatening
illness of a family member is their first major
confrontation with death.

• For family palliative caregivers, the physical, emotional,

financial and social impact of providing care for a dying
relative may be accentuated by social burdens such as
restrictions on personal time, disturbance of routines and
diminished leisure time.
• There is potential for conflict and poor role resolution as
the caregiver attempts to manage multiple
responsibilities and forgoes his or her own needs in
favour of those of the patient.

• Studies of the emotional consequences of caregiving

reveal that relatives of cancer patients may experience
psychological problems as the patient → anxiety,
depression, reduced self-esteem, feelings of isolation,
mental fatigue, guilt and grief → can have a negative
impact on the family’s quality of life.
The difficulties and the stress of caregiving
Even if given the same tasks, however, the stress perceived or imposed
on the caregivers also varies with multiple factors.
• Caregiver’s education level was inversely related to their
psychological symptoms and the total stress symptoms.
• Caregiver’s perception of difficulty in performing tasks was positively
related to their total stress symptoms.
• The well being of the patient as perceived by the caregiver also has
an impact on that of the caregiver.
• The role of the family in the context of a member suffering from
cancer is also greatly affected by the ambient culture and the social
milieu.
• The modification of the disease pattern is also affecting the
caregiving process.
Vulnerability of family caregivers
• One can appreciate that caregivers are at risk of adverse
physical and emotional outcomes during the caring process.

• Informal caregivers can suffer from fatigue, inadequate sleep

and rest, lack of exercise, and poor nutrition.

• Emotionally, they may have anxiety, depressive mood, and

worries about the burden and the uncertainty of future.

• The three most commonly identified stress items were all

psychological, including feeling tired most of the time (62%),
often get worried about things (59%), and easily upset or
irritated (55%).
 The needs of family caregivers
• Because family caregivers play a central role in the
wellbeing of most people with a terminal illness, it is
important that attention is given to their needs and
experiences.

• However, the principle of regarding the needs of the

family and the patient as equally important in care
provision is not always upheld, with caregivers’ needs
usually overshadowed by concerns about the patient’s
comfort, practical care, information needs, and
emotional support.
Should home death be viewed as the gold standard?
• The benefits of palliative care at home include a
sense of normality, choice, and comfort.

• Home death is commonly viewed as a more dignified

and comfortable experience than death in hospital.

• Furthermore, many healthcare agencies promote

home-based palliative care because it is more cost
effective than hospital care.
• A study of the factors associated with successful
home palliative care and dying at home found that
men rather than women are more likely to die at
home.

• Other factors included having adequate financial

resources, having cancer or AIDS, having a healthy
full-time caregiver, not living alone, having personal
needs that could be managed at home, and
expressing a preference for dying at home.
• While home death may be the desired goal for some
families, it may also be a romantic ideal
inappropriately encouraged by health professionals.

• Advocacy for home care should not put pressure on

families, and a desire for home death ought not be
assumed; families and patients need to be able to
make an informed choice about where death should
take place and to recognise that the best place for
death to occur may change over time.
Supportive strategies for effective home-based palliative care
• A meta-analysis has shown an advantage for patients
and caregivers who receive support from designated
palliative care teams.

• The burden of caring for a dying relative can be

detrimental to family caregivers and there has been a
dearth of intervention studies undertaken to address
their unmet needs → improved support for families.
Future challenges for optimal home-based palliative care
• Assessment of a home death should incorporate the
earlier phases of care, when the focus first changed to
palliative care.

• A recent review identified a need for general

practitioners to improve both symptom management
skills and teamwork, but all palliative care providers must
accept responsibility for ensuring that the principles of
palliative care are widely operative and clearly
demonstrated.
Goals in family-centered palliative care
1. Meeting the needs of the family
2. Minimize caregiver’s distress
3. Improving the well being outcome of caregivers
4. Empower family to maintain patient’s comfort.

An empirical approach to supporting families in palliative

care, with reference to the Stress and Coping Theory from
Lazasrus & Folkman (Doris, 2007).
• When facing stressors, people will have their own appraisals of
the stressor and the situation.

• These stressors can be perceived as a challenge or a threat, and

the emotional outcome of the one facing the stressor is affected
by their appraisals and the effectiveness of their coping
strategies.

• Coping serves two broad functions, in terms of problem focused

coping (to modify the stressor if possible) and emotional coping
(to modify how one feels about the stressor).
• During the process of appraisal, the informal caregivers
will assess resources → whether adequate to meet the
demands.

• Resources can be from two sources (1) the inner

resource of the caregiver, which is the strength inside
the person that can be drawn up in stress (2) the outer
resources, which refer to things like income, education,
knowledge, social status and social support.
• Various coping patterns have been identified,
including (1) confrontation e.g. fight for what is
desired (2) distancing e.g. refuse to think about it (3)
self controlling e.g. keep the feelings to oneself
(4)seeking social support e.g. talk to someone helpful
(5) accepting responsibilities e.g. promise to do
better (6) escape-avoidance e.g. sleep and eat more
(7) planful problem solving e.g. make an action plan
to follow (8) positive re-appraisal e.g. feeling
renewed and rediscovered life meaning.
• Although there may be common patterns in an individual, people
tend to use most ways of coping depending on the degree of the
stressor and the situation. Personality, past life experiences, and
in this context, past medical experiences may also affect how
family members cope with the situation.

• What works for one situation may not work for the other, and
therefore there is no good or bad coping, but instead, effective
or ineffective coping.

• The outcome of the coping process i.e. positive or negative well

being of the caregiver depends on their appraisal.
• An empirical clinical framework in supporting the family in
palliative care, which consists of (1) modification of the
stressors (2) enhance resources and coping (3) reflections and
transcendence.

• Modification of the stressors means optimizing patient’s

condition for care including minimizing symptoms and
maximizing function.

• Enhance resources and coping can be directed towards

tangible support, practical problem solving, information giving
and skill training.

• Spiritual care, as an integral part of palliative care, helps

patients and families to transcend beyond their sufferings.
 Supporting the family: an empirical framework
(1) Modify Stressor
• Optimize symptom control
• Maximize functional capacity
• Clearly communicated drug
regimen
• Anticipatory, realistic discharge
planning
(3) Transcendence
• Spirituality
• Cognitive process of meaning in
illness
• Means: legacy, narration
• Cultural context
• Religious context
(2) Enhance resources & coping
• Information
• Skill training
• Finance
• Equipment, home modification
• Other tangible support
• Respite: physical or mental
pause
• Stress management
• Emotional support
• Psychological intervention
• Getting to know the family is what we palliative
care workers regarded as an important part of
patient care.

• In general, there is lack of a structured approach in

assessing the family in clinical practice.

• Table below contains the list of potential useful

information of the family that can be helpful in
formulating the supporting strategy.
 Assessing a family in palliative care
A family tree Family culture & decision making
• Key decision maker(s)
Significant others • Dominant values
• Blood related or non-blood
related Communication channels
• Overseas or local • Persons
• Legal or non-franchised • Network of dissemination

Kinship
• Direct care giving
• Indirect care giving e.g. finance
Key family functional parameters Identify family at risk
• Cohesiveness • Florid physical and
• Conflict: presence and ability to psychological symptoms in
resolve caregiver
• Expressiveness
• Poor social support &
Resources & coping
education level
• Finance
• Poor family functional
• Household work: maid, home helper
parameters as above
• Social network: friends, church
mates • Maladaptive coping pattern:
• Advocacy: social worker, community drug addiction, alcohol
leader • Psychiatric illness
• Adaptive & maladaptive coping • Multiple or consecutive losses
patterns
• Ability to mobilise resources (vs
possession)