2012 EDUCATIONAL BOOK - American Society of Clinical Oncology

elationship” is also acknowledged. This approach is based
on sharing information with family members on what to
expect and the skills necessary to help care for the patient at
home, providing desired physical comfort and emotional
support, and promoting shared decision making focused on
the patient, while also attending to the needs of family
members.
Role of the Family and Informal Caregiving in Oncology
Approximately 28.8 million adults in the United States
are now family caregivers. 1,12 Sidebar 1 lists are some
relevant data on the demographics of care in the United
States, where unpaid caregiving is the largest source of
long-term care services (Sidebar 1).
Caring is fundamental to human survival. 13 It is understood
to imply a distinct way of being, believing, and acting
that calls for commitment, emotional involvement, knowledge,
and new coping skills. It motivates families and gives
new meaning and structure to life. 14 At the same time,
caregiving imposes a great burden on families at psychologic,
social, and financial levels. As many as two-thirds of
caregivers report physical or mental health problems owing
to caregiving, and nearly 50% have a chronic health condition
that requires ongoing medical care. 1
Because of the progressive shift from hospital to ambulatory
or home cancer care, informal family caregivers are
often required to replace skilled health care workers in the
delivery of complex care to their ill family members. They
KEY POINTS
● Although Western health professionals traditionally
carry responsibility only toward their patients, the
physicians’ duty in other cultures extends to families
and communities.
● Today’s Western medicine increasingly acknowledges
the need for health professionals to include the family
in patient-centered care and to develop a functional
system of collaboration and partnership with patients
and their families.
● The American Academy of Family Physicians defines
“family” as “a group of individuals with a continuing
legal, genetic, and/or emotional relationship” and
acknowledges that society “relies on the family group
to provide for the economic and protective needs of
individuals, especially children and the elderly.”
● As informal caregiving by family members is rapidly
increasing worldwide, oncologists are asked to assume
broader responsibility toward their patients’
families during the course of the patient’s illness and
in the grieving stage.
● Cancer is a “family illness” that can only be understood
in terms of the social, cultural, religious, and
family responses to the underlying disease, including
the ways in which the patient and family conceptualize
and elaborate it. For this reason, the family is
increasingly recognized as the basic social and ethical
unit of care.
e16
SURBONE AND BAIDER
Sidebar 1. Demographics of Care in the United
States
● Fifty-two million informal/family caregivers provide
care to an ill or disabled person 20 years and
older.
● Thirty-four million adults (16% of population)
provide care to persons 50 years and older.
● Between 6 to 7 million family caregivers provide
care to adults 65 years and older who need
assistance with everyday activities.
● It is estimated there will be 37 million informal
caregivers by 2050, an increase of 85% from 2000.
are asked to perform multidimensional tasks, including
treatment monitoring; treatment-related symptom management;
emotional, financial, and spiritual support; and assistance
with personal and instrumental care. 15,16
Family members of patients with cancer strive to make
sense of the unforeseen illness and its intrusion by enduring
and reinterpreting the meaning of each other’s experience
and finding a shared meaning within the private family
culture. 17 Cultural expectations also regulate and influence
basic meanings in the course of the socialization process and
the roles that each member might assume. Even though
caregiving can be a deeply rewarding spiritual experience of
connection with a loved one in need, caregivers of patients
with cancer often perceive themselves as living a shrinking
life, being forced to take responsibilities beyond what they
feel comfortable doing, struggling to keep their home as a
home, and no longer feeling the joy of being together with
their family. 18,19 Sidebar 2 lists some of the positive and
negative behavioral changes that can arise within a family
when a member has cancer.
To optimize the quality of caregivers’ lives and their
ability to support and enhance the quality of care delivered
to each patient with cancer, we must take into account the
extent to which providing care results in physical, emotional,
spiritual, and financial burdens for them and the
ways in which these burdens can be addressed. Empirical
studies show that the burden placed on family caregivers
has negative effects on the quality of life of both the patients
and their caregivers, particularly during advanced stages of
cancer. 20 Professional interventions should therefore be directed
at the family as a unit and not aimed solely at making
caregiving easier. The challenge for oncology professionals is
to integrate and tailor interventions according to the specific
needs of the care recipient and caregiver and relate to this
Sidebar 2. Behavioral Changes in Response to
Cancer in a Family Member
● New coping styles and strengths
● Discovery of meaning
● Increased cohesiveness and spirituality
● Stress and crises following recovery
● Complaints, anger, and withdrawal