2012 EDUCATIONAL BOOK - American Society of Clinical Oncology

Are Oncologists Accountable Only to
Patients or Also to Their Families?
An International Perspective
By Antonella Surbone, MD, PhD, and Lea Baider, PhD
Overview: In most societies, health professionals traditionally
carry responsibility only toward their patients. However,
this is not the case in all cultures. In the contemporary
practice of oncology in Western cultures, there is a shift
toward assuming broader responsibility for patients with cancer’
families during the illness course, the grieving stage, and
in cancer prevention and genetic counseling.
Traditional family, community, and religious values play a
central role in determining people’s perceptions and attitudes
toward life and death as well as toward caregiving for a sick
relative. The meaning of cancer illness within the family
culture is thus influenced not only by each individual’s values
CANCER HAS become a global health emergency because
of the aging of the world population that is
occurring at unprecedented rates and portending an everincreasing
demand for care. It is expected that by 2030, the
US elderly population—conventionally defined as the population
segment composed by people over age 65—will double
and reach about 70 million people. 1 As the population ages,
morbidity for chronic illness and disability increases, with
consequent escalating demands for informal care delivered
by family members or close friends. Oncologists are asked to
recognize the key role of family in each patient’s experience
of cancer and progressively assume more responsibilities
toward families, during the entire course of the illness, from
diagnosis to survivorship or end-of-life, as well as in the
grieving stages. 2
A family’s experience with cancer, including caregiving,
always occurs in a particular cultural milieu: the traditional
and religious values of each community play a central role in
determining people’s perceptions and attitudes toward illness
and death, as well as toward caregiving to a sick
relative. The meaning of cancer is thus influenced not only
by each individual’s values and beliefs but also by the
family’s convergence and diversity of meaning, as well as
their taboos and secrets. Consequently, in many cultures
physicians have always included patients, families, and
communities in their professional responsibility. 3
Although Western physicians’ professional duty has traditionally
being only toward their patients, today’s medicine
increasingly acknowledges the need for health professionals
to involve the family in patient-centered care and to develop
a functional system of collaboration and partnership with
patients and their families. 2,4
Patient- and Family-Centered Care in the United States
The Institute of Medicine has identified the concept of
patient-centered care as one of the keys to improving health
and quality of care in the United States, including efficiency
and costs. 3 In patient-centered care, physicians clearly have
responsibilities toward both the patient and the family. The
American Academy of Family Physicians defines “family” as
“a group of individuals with a continuing legal, genetic,
and/or emotional relationship.” Society, the Academy states,
“relies on the family group to provide for the economic and
and beliefs but also by the family’s makeup and dynamics, as
well as their taboos and secrets.
Global cancer care should therefore be directed at the
family as a unit, while respecting patient autonomy and
privacy. This reappraisal of our traditional understanding of
physicians’ duty as solely directed at the patient is reflected
in the recent US trend toward a patient- and family-centered
care approach. An additional challenge for oncology professionals
is to integrate and tailor interventions toward the
needs of both care recipients and caregivers and relate it to
this dyad as the basic and enduring unit of care.
protective needs of individuals, especially children and the
elderly.” 5
The American Academy of Pediatrics and the American
College of Emergency Physicians support the model of
patient- and family-centered care (PFCC). The latter defines
the PFCC as “an approach to health care that recognizes the
role of the family in providing medical care, encourages
collaboration between the patient, family, and health care
professionals, and honors individual and family strengths,
cultures, traditions, and expertise.” 6 This approach has
proven effective in pediatric hospital and home care and
emergency settings and is now being extended to adult
care. 7
According to The Institute for Patient- and Family-
Centered Care, the patient- and family-centered approach
focuses on the partnerships between patients, families, and
providers at the clinical level. Patients and families are
engaged as advisors and leaders in developing new policies
on quality and safety. Practitioners recognize the vital role
of family members of patients of all ages and acknowledge
that emotional, social, and developmental support are integral
components of health care. The definition of family, as
well as the degree of the family’s involvement in health care,
is determined by the competent patient, who maintains
control of decisions concerning his or her own health care. 8,9
In its expert report on cancer pain relief and palliative
care, the World Heath Organization states the importance of
enhancing the quality of life of both patients and family
members. 10 Teno et al developed a conceptual model of
patient-focused, family-centered medicine in end-of-life care,
where the patient is at the center of care and the family,
defined as “all people—whether or not they are blood relatives—with
whom the patient has a very close or intimate
From the Department of Medicine, New York University Medical School, New York, NY;
and the Hebrew University Medical School, Sharett Institute of Oncology, Hadassah
University Hospital, Jerusalem, Israel.
Authors’ disclosures of potential conflicts of interest are found at the end of this article.
Address reprint requests Antonella Surbone, MD, PhD, Department of Medicine, New
York University Medical School, 550 First Ave., New York, NY 10016; email: antonella.
surbone@gmail.com.
© 2012 by American Society of Clinical Oncology.
1092-9118/10/1-10
e15