NEW YORKThere are no minimum standards for the quality of
the psychosocial care given at institutions, said Jimmie C.
Holland, MD, leadoff speaker at the Pan-American Congress of
Psychosocial and Behavioral Oncology. We would never let that
happen with infectious disease, said Dr. Holland, Wayne Chapman
Chair of Psychiatry and Behavioral Sciences, Memorial Sloan-Kettering
The founding president of both the American Society of Psychosocial
and Behavioral Oncology and the International Psycho-Oncology
Society, Dr. Holland is working with the National Comprehensive
Cancer Network (NCCN) to develop such standards.
The NCCN, a coalition of 17 leading US cancer centers, has developed
practice guidelines for more than 93% of all cancers. The
multidisciplinary panel convened to develop the psychosocial
guidelines includes psychiatrists, psychologists, social workers,
nurses, clergy, and patient advocates.
The panels first task, Dr. Holland said, was to find a
nonstigmatizing word that covered psychological, social, family, and
spiritual problems. We hit upon the word
distress, she said. Distress can describe
unpleasant emotional experiences on a continuum from the normal
feelings of everyone with cancervulnerability, sadness,
fearsto disabling problemsdepression, anxiety, social
isolation, and spiritual crisis, Dr. Holland noted.
Putting that definition on it, she said, allows us
to have all the disciplines involved and to begin to develop a system
of services that is an integrated phenomenon and not disjointed.
Unrecognized and untreated distress, Dr. Holland said, may complicate
the oncology teams work. Among the effects she cited were
patients making more frequent visits, having greater difficulty in
making treatment decisions, and turning to alternative therapies
outside the traditional system.
Preliminary recommendations of the panel, Dr. Holland said, call for
each institution in the NCCN to form a multi-disciplinary committee
to set up a method for rapid identification of distress in cancer
patients and an algorithm for referral to the appropriate discipline.
Patients should be screened for distress at their initial visit
and when clinically indicated thereafter, she said.
In her own practice setting, Dr.Holland has used both the Hospital
Anxiety Depression Scale and a thermometer to screen for
distress. With the thermometer, patients are asked to rate their
distress on a scale of 0 to 10, just as they would their pain.
If patients mark a level of 5 or above, they ought to be
triaged for evaluation and for possible treatment, she said.
Patients are also asked to check off problems they are facing on a
form that includes items such as child care, family relationships,
emotional and spiritual problems, as well as a long list of physical
symptoms that are relayed to the patients oncologist.
A nurse can do such screening in the waiting room, evaluate the
findings, perhaps ask a few questions, and quickly make appropriate
referrals, Dr. Holland noted. One benefit of the proposed model, she
said, is that all of our disciplines are indeed working
together in a seamless unit for people with distress.
Dr. Holland emphasized the importance of including clergy in the
referral system since cancer creates an existential crisis in
most people. Referrals might be made, she said, for concerns
about death or afterlife, grief, conflicted belief systems,
hopelessness, and conflicts between religious beliefs and recommended
With adoption of standards, Dr. Holland hopes that reimbursement for
services to manage distress will be less of a problem. She also
expects quality assurance assessment to become routine and perhaps
incorporated in JCAHO reviews.
In Canada, national standards for psychosocial oncology were adopted
in September, John M. Farber, MA, reported at the conference. Mr.
Farber is director of psychosocial oncology, CancerCare Manitoba,
Winnipeg, and founding president of the Canadian Association of
Psychosocial Oncology (CAPO).
Developed under the auspices of CAPO, the standards were devised and
adopted within 18 months. They cover organizational structure,
professional issues, patient services, research and program
evaluation, and patient and staff education.
During the drafting process, the Canadian Association of Provincial
Cancer Agencies and the Canadian Council on Hospital Services
Accreditation were invited to participate. As a result, the standards
may be referenced in the next Canadian Cancer Center standards.
Among the 11 principles established, Mr. Farber said,
are that psychosocial oncology must be an integral part of
cancer care. It is no longer acceptable to be considered a nice
addition dependent on resources and available funds.
The most contentious issue, he noted, was the standard that at least
two of the clinical disciplines of social work, psychology, and
psychiatry must provide the care, and the leadership of the service
must come from one of these three disciplines. Concern was
expressed that pastoral care and nursing felt excluded, he
said. However, the valuable contributions of these professionals to
psychosocial oncology programs are clearly recognized in the
standards, he noted.