PSYCHOSOCIAL ASPECTS OF CANCER

It is concerned with the understanding and treatment of the social,

psychological, emotional, spiritual, and functional aspects of cancer, from
prevention through bereavement. Psychosocial oncology involves a whole-person
approach that addresses a range of needs to improve or optimize quality of life in
those affected by cancer. Cancer has been associated with hopelessness and death
and with this comes a unique set of beliefs and myths. Here are five major fears
that go along with cancer: death, disability, disfigurement, dependence, and
disruption of key relationships. At first, these fears center on the threat to life. As
patients and families progress through the cancer journey, these fears then center
on the threat to quality of life. One of the biggest concerns in the cancer experience
is uncertainty. Because cancer is unpredictable and uncertain for most patients and
their families, professionals need to be comfortable with their own uncertainty and
mortality since our patients and their families must live with this throughout the
journey. Because of this, hope is a very crucial element for dealing with the
challenges and a successful adaptation to cancer. Assisting patients and families in
defining what hope is for them at each stage of the process is crucial, and can be
especially difficult in end-of-life care.
The cancer experience is structured into different psychosocial stages that are
recognized as potential crisis points in the lives of those affected by cancer. Each
stage has common issues/reactions and psychosocial (or adaptive) tasks associated
with it that need to be mastered to cope effectively with cancer. An essential
function of professionals is to assist patients and families in coping effectively with
the social and psychological tasks confronting them at each stage of the illness
trajectory. The stages of the cancer experience:
* Diagnosis
* Initiation of treatment
* Treatment
* Termination of treatment
* Survivorship
* Recurrence/metastasis
* Terminal phase/end of life
* Bereavement
Home Care and Hospice are uniquely qualified and positioned to help with these
different stages of the cancer experience.
 During the diagnosis stage, shock, denial, disbelief, panic, guilt, anger,
hostility, loss of control, feelings of alienation, despair, concern for family, fear of
pain, mortality, disfigurement, and fear of dying are all common issues and
reactions experienced by cancer patients and their families. The typical reaction to
a cancer diagnosis is shock, which can be a useful protective mechanism—
allowing the family system time to adjust. Once beyond the initial diagnosis, a
variety of emotional, behavioral, and cognitive responses begin to emerge. There is
a need to move from shock to processing information and making treatment
decisions, and all of this usually occurs in a very short period of time. The
diagnostic process involves a confrontation with one's own mortality and tends to
heighten the sense of personal vulnerability. Coping with overwhelming emotional
reactions and regaining some sense of emotional equilibrium is a must during this
stage. Patients are also trying to figure out how to maintain relationships with
family and friends, accept the uncertainty of the future, and search for meaning in
the illness and life. Education and information are important intervention tools at
this stage and knowing how patients and families want to receive information and
how much is an important aspect of care. At this stage our patients are saying...am
I going to die?
At the initiation of and during treatment, several issues are being faced: side
effects, physical changes, sexual dysfunction, decreased self-esteem, disruption in
work and recreation, role changes, increased dependence, depression, and anxiety.
Clinicians should pay particular attention to pain, cancer-related fatigue, and body
image issues during this period. Assessing for distress and helping to moderate this
are important functions at this time. With the beginning of treatment, patients start
to feel more in control because they are doing something about their cancer,
whereas loved ones tend to feel more helpless because they are sitting and waiting.
Reorganizing the family to incorporate the demands of treatment is a key task. The
reality of this stage is....Let's get on with it.
The stages of termination of treatment and survivorship are combined in
many places in the literature, but they can be very different experiences for many
cancer patients and their families. Some common issues and reactions that are dealt
with at this stage are relief, fear of recurrence, return to work issues (do I have a
job, will I be discriminated against in the workplace), insurance problems, late
effects of treatment, and survivor guilt. Reactions to the end of treatment vary and
depend on the reason treatment ended. Common issues include whether treatment
was successful, are there side effects from treatment, or was there disease
progression.
Even if treatment was successful, patients report increased apprehensiveness
at the end of treatment and during survivorship. Many patients wonder are they
going to stay safe now? Because there is less interaction with the healthcare team,
fear and uncertainty increase at this stage. Many patients and families want some
type of continued connection with the treatment staff. Problems that predate the
cancer diagnosis still exist. Patients and families are adapting to remaining
physical impairment and psychological stress while changing the expectations of
support. Patients and families do not want to think of cancer as a chronic disease;
they want it over and behind them. Resuming "normal" activities and relationships
is important during this period. Patients at this stage often require less medical
information and more guidance and support in the psychosocial arena. So the
reality of survivorship is......now what?!
When recurrence and/or metastatic disease becomes part of the cancer
experience, fear, anger, feelings of betrayal, adjusting to the idea of cancer as
chronic, shifting goals of care, and concern for family are common issues and
reactions. Emotional reactions can be more intense because of the sense of betrayal
that can be felt. Coping with mortality is also a core theme during these periods.
All of the issues and reactions that occur at diagnosis can come back into play
during recurrence or with metastatic disease. Patients and families need assistance
with re-education about treatment and making treatment decisions. The reality of
recurrence for patients and families is.... It's Back.
During terminal phase and at end of life, the person with cancer and their
family is challenged to maintain a meaningful quality of life, cope with declining
physical condition, confront spiritual issues, and plan for surviving family
members.
The final stage of the cancer experience is bereavement. Loved ones have
several tasks to accomplish during this stage: accept reality of the loss, grieve,
adapt to life without the loved one, and learn how to invest energies in other
relationships and life. When a loved one passes away, there are several things we
can do: be present, acknowledge there is not a right or wrong way to grieve, honor
the loved one, and encourage self-care and support from others. Home care and
hospice that include bereavement programs are vital during this time period.
Referral to bereavement support groups and counseling are good intervention tools
as well. The reality for family and loved ones is...Am I ever going to be okay
again?
Assessment, Interventions, and High-Risk Factors
The psychosocial issues and needs of the cancer patient and their family are
identified through screening and assessment. Screening patients and families for
psychological distress at crucial points along the cancer continuum can be effective
in helping to identify those in need of psychosocial services. Interventions at all
stages of the cancer experience must be directed at the patient and caregiver
(families) and should be guided by an understanding of their needs and issues as
determined by assessment. Oncology social workers, nurses, psychologists, case
managers, and navigators are some of the professionals that provide psychosocial
services and care in oncology and this is accomplished in a variety of settings.
Intervention options could include:
* Education—about what to expect throughout the cancer experience
* Information—on their disease, about specific local and national resources
* Referral—to transportation, lodging, home care and hospice
* Resource coordination—for all the psychosocial interventions with patients and
families
* Support groups—for specific disease groups, new patients, survivors,
bereavement
* Discharge planning—from the hospital to home care, hospice, assisted living
* Counseling—for depression, anxiety, adjustment issues
* Crisis intervention—for suicidal ideation.
Indications for more intensive intervention and/or referral include depression,
anxiety, severe grief, psychosis, delirium, suicidal statements and ideation,
significant conflict between patient and healthcare professionals, and significant
conflict between patient and family.
Having an understanding of the stages of cancer, common psychosocial
issues and reactions, adaptive tasks, risk factors, as well as interventions and
resources are all necessary in helping to address the psychosocial issues of cancer
patients and families.
 CANCER REHABILITATION
Cancer rehabilitation can be defined as a process that assists the cancer patient to
obtain maximal physical, social, psychological, and vocational functioning within
the limits created by the disease and its resulting treatment. The goal of
rehabilitation is to help a person regain control over many aspects of their lives and
remain as independent and productive as possible. Rehabilitation can be valuable
to anyone with cancer and those recovering from cancer treatment.
Objectives in rehabilitation of patients with cancer:
• Psychosocial support
• Optimization of physical functioning
• Vocational counseling
• Optimization of social functioning
How cancer rehabilitation can help
Rehabilitation can improve the quality of life for people with cancer and their
families, including:
• Improving physical strength to help offset any limitations from cancer
and cancer treatment
• Helping the person with cancer become more independent and less
reliant on caregivers
• Helping the person with cancer adjust to actual, perceived, and
potential losses due to cancer and cancer treatment
• Reducing sleep problems
• Lowering the number of hospitalizations
CANCER REHABILITATION SERVICES
Many cancer centers and hospitals offer a variety of cancer rehabilitation services
to their patients, or are willing to help them identify local resources to assist with
rehabilitation. Patients and family members are encouraged to be active, informed
partners in the rehabilitation process and seek out the services they need. Talk with
a nurse or social worker about the services you are interested in:
• Patient and family education and counseling
• Pain management techniques and medications
• Nutritional counseling
• Exercise programs to help to build strength, endurance, and mobility
• Smoking cessation education and support programs
 • Assistance with activities of daily living (ADLs) such as eating,
drinking, dressing, bathing, using the toilet, cooking, and basic housekeeping
PARADIGMS OF CANCER REHABILITATION
Dietz identified 4 categories of cancer rehabilitation that address the scope and
course of the illness. Preventive interventions
Preventive (or "preventative") interventions lessen the effect of expected
disabilities and emphasize patient education. Preventive measures also include
approaches to improving the patient's physical functioning and general health
status. In addition, psychological counseling before treatment can assist with the
early identification of adjustment issues to allow for prompt intervention.
Restorative interventions
Restorative interventions are procedures that attempt to return patients to previous
levels of physical, psychological, social, and vocational functioning. Postoperative
ROM exercises for patients undergoing mastectomy and reconstructive surgery for
head and neck cancer represent this category of interventions.
Supportive interventions
Supportive rehabilitation is designed to teach patients to accommodate their
disabilities and to minimize debilitating changes from ongoing disease. Supportive
efforts include teaching patients how to use prosthetic devices after amputation, as
well as instructing the patient on use of other devices and procedures that assist in
self-management, self-care abilities, and independent functioning. Other
supportive efforts include provision of emotional support associated with
adjustment issues while the patient is learning to cope with physical lifestyle
changes.
Palliative interventions
During the palliative phase, when increasing disability and advanced disease
process may be present, interventions and goals focus on minimizing or
eliminating complications and providing comfort and support. Palliative goals
include pain control, prevention of contractures and pressure sores, prevention of
unnecessary deterioration from inactivity, and psychological support for the patient
and family members.
THE CANCER REHABILITATION TEAM
Comprehensive cancer rehabilitation is provided by a team of health care
professionals who work closely together. The team helps a person adapt to his or
her situation, whether the changes are temporary or permanent. These
professionals may include any of the following:
Oncologist. This is a medical doctor who specializes in the care and treatment of
people with cancer. He or she may be responsible for coordinating the cancer
rehabilitation team.
Physiatrist (also called a rehabilitation specialist). This person is a medical
doctor who treats injuries and illnesses that affect how you move, including the
treatment of pain.
Rehabilitation nurse. A rehabilitation nurse specializes in assisting people with a
chronic illness, disability, or injury to restore physical functioning and adjust to a
changed environment or lifestyle. A rehabilitation nurse helps people with cancer
increase independence, reduce potential complications after cancer treatment,
provide patient and family education and counseling, and assist in case
management.
Physical therapist. A physical therapist works with patients to help restore
mobility and physical functioning, while preventing further disability. This service
may be particularly important for people who have lost muscle tone because of
prolonged bed rest, have trouble with balance, or need to use canes or other
assistive devices after cancer treatment.
Occupational therapist. An occupational therapist helps people prevent and live
with illness, injury, and disability. For example, an occupational therapist may help
someone avoid lymphedema after breast cancer surgery. In addition, occupational
therapists are trained to evaluate the layout of the home, school, or workplace to
increase patients' mobility and assist with activities of daily living.
Recreational therapist. A recreational therapist helps a person with cancer reduce
stress, anxiety, and depression by using games, exercise, arts, crafts, and music to
build confidence and strengthen personal skills.
Dietitian. A dietitian is a food and nutrition professional who answers questions
about nutrition and helps people with cancer plan menus to cope with special
needs. Dietitians may provide nutritional counseling; develop meal plans; and
monitor the body weight, caloric, and dietary needs of a person with cancer.
Psychologist/psychiatrist. These and other mental health professionals work to
address the emotional, psychological, and behavioral needs of the person with
cancer and his or her family. These may be longstanding or have resulted from the
illness and consequences of treatments. These mental health professionals can help
patients process their experience and find ways of coping with changes in their
lives.
Social worker. A social worker may counsel patients and families in discharge
planning (transferring care from the hospital to home) and home care, help with
coping skills and lifestyle adjustments, and facilitate support groups. Social
workers are also trained to help people living with cancer cope with financial
concerns and provide links to community resources.
Home-health aide. This person provides personal care services by helping people
with ADLs, such as bathing, dressing, using the toilet, and moving around. Some
home health aides are specially trained to provide more complex services, under
the supervision of a nurse.
Vocational counselor. A vocational counselor specializes in helping people
recovering from cancer find and keep a satisfying job. This is important for those
who may no longer be able to return to their previous position because of physical
or emotional limitations.
Clergy member/chaplain. This professional is a trained member of the clergy
who offers spiritual support and rituals for patients and their families, facilitates
support groups, and offers support in health crisis situations. Most hospitals have
clergy on staff who work with people of all faiths. Some people may prefer to
work with their own clergy person.
Case manager. A case manager helps to design and monitor the cancer
rehabilitation program. Case managers often act as the liaison between the person
with cancer, the cancer rehabilitation team, and the insurance provider.