Rehabilitation Needs of the Patient With Cancer

DEBRA C. BROADWELL, PHD, RN, ET‘

As the success rate of earlier diagnosis and more effective cancer therapy increases, more individuals
are finding that they are living with a cancer diagnosis. Cancer, as a chronic illness, requires that all
health care professionals view the patient from a perspective of functional abilities rather than from a
disease process. Rehabilitation is a dynamic process and is generally goal-directed. The goal of rehabili-
tation is to help the individual to function at his maximum level within the limitations and constraints of
the disease and treatment protocols (Dudas, 1984). The physical, mental, emotional, social, sexual, and
economic potential of the individual are the broad areas involved in the assessment, plan, implementa-
tion, and evaluation of rehabilitation programs. The rehabilitation team consists of the oncologist,
surgeon, nurse, social worker, physical therapist, occupational therapist, nutritionist, and others de-
pending on the special needs of the individual. The most important members of the team are the patient
and family. The patient involved on the team can help to identify specific needs throughout the trajec-
tory of the cancer diagnosis and treatment. The spouse and friends of the patient with cancer are
important support systems and assist the patient in exploring feelings and needs (Frank-Stomborg and
Wright, 1984). Dietz (1980) described four rehabilitation stages for cancer programs: preventive,
restorative, supportive, and palliative. During each phase of rehabilitation the physical, mental, emo-
tional, social, sexual, and economic needs of the patient must be considered. This report identifies
specific areas of concern for the patient and family during the four stages of rehabilitation and to identify
potential action plans for individual patients.
Cancer 60563468, 1987.

A S THE SUCCESS RATE of earlier diagnosis and more

effective cancer therapy increases, more individ-
uals are finding that they are living with cancer. Al-
though now seen as a life-threatening, chronic illness,
the psychosocial pressures imposed by a cancer diag-
nosis are intense and do not completely disappear even
when the disease is in remission.’ “Cancer,” “death,”
and “terminal illness” have been used as synonymous
terms in the past. Patients and families may not realize
that the impact of cancer will require coping with
changes over an extended period of time and that cure
may be possible for some types of cancer.
Cancer may be considered a catastrophic disease
which results in physical and psychological changes that
increasingly challenge one’s ability to function.* Thus, if
cancer is considered a chronic illness, health care pro-
viders will need to view the patient from a perspective of
functional abilities rather than from a disease process.
The maintenance of functional abilities will require a
From the Emory University Nell Hodgson Woodruff School of
Nursing, Atlanta, Georgia.
* Associate Professor.
Address for reprints: Debra C. Broadwell, PhD, RN, ET, Emory
University, School of Nursing, Atlanta, GA 30322.
Accepted for publication January 29, 1987.
planned rehabilitation program. Rehabilitation is a dy-
namic, goal-directed process designed to help individ-
uals to function at their maximum level within the limi-
tations and constraints of the disease and treatment
protocol^.^ The physical, mental, emotional, social, sex-
ual, and economic potential of the individual will need
to be assessed and the findings used to plan and imple-
ment a rehabilitation program for the person with
cancer.
The success of the rehabilitation program will depend
on four major factors: first, the commitment of the
health care team to provide ongoing evaluation and
planning for changes as the patient lives with cancer;
second, the identification of a planned rehabilitation
program which has a key individual to coordinate activi-
ties within and among team members; third, the in-
volvement of the patient and family in the program
from the initial diagnosis; and fourth, the effectiveness
of communications between team members which will
directly impact the success of the rehabilitation program
in general and for individual patients. It is a well estab-
lished fact that the physician is in charge of the patient’s
overall care and treatment. The individual who will as-
sume the responsibility of coordinating the rehabilita-
tion plan may be the physician or a competent health
564 CANCERAugust I Supplement 1987
care provider assigned the role by the physician or the
health care institution. The central role of the physician
in planning and implementing a rehabilitation program
includes the knowledge related to diagnosis, treatment,
and prognosis. If any one team member works in isola-
tion of the team or without knowledge or consideration
of the rehabilitation goals for a patient, the ultimate
success of the program may be limited. Patients often
communicate that no two health care professionals said
the same thing about their care. The health care may
appear fragmented and duplication of procedures and
tests may occur.
Cancer Rehabilitation
Various authors have identified basic principles of on- deterioration.
cology rehabilitation which include the concepts of ho-
listic care, interdisciplinary teams, prevention, educa-
tion, early intervention, and ongoing reasse~sment.~.~
Dietz described four rehabilitation phases for cancer
programs: preventive, restorative, supportive and pallia-
tiveS6Baldonado and Stahl defined oncology rehabilita-
tion as the process of prevention, maintenance, restora-
tion, and reeducation for people with cancer over the
trajectory of the di~ease.~Quality of life during and after ample,
cancer treatment is another area which is frequently dis-
cussed in the literature. Although no one definition has
been agreed upon, satisfactory quality of life includes
physical, social, and emotional well being.' The mea-
surement of quality of life may assist in identifying the
damaging effects of the disease and its treatment, in
comparing the effects of different treatments, and in
selecting treatment options when alternatives are avail-
able.' The questions and concerns over quality of life are the study
inherent in cancer rehabilitation programs.
Harvey and associates reported the results of a survey
of cancer rehabilitation programs in 36 institutions. The
programs were organized within departments of oncol-
ogy or rehabilitation medicine.' A variety of personnel
were involved and while the physician directs the pro-
grams, social workers were utilized most frequently in
all types of centers. Other members of the rehabilitation
team included oncologists, oncology nurses, occupa-
tional therapists, physical therapists, psychologists, and
the patient's primary physician. The authors found that
program content focused on patient education, family
involvement, protocols for specific sites, and pain con-
trol methods.
To examine the needs of patients with urologic
cancers, it is necessary to use a systematic model of
cancer rehabilitation. Stages of the disease process may
be used as a basis for establishing a rehabilitation plan
and certain principles exist within each stage. Using
Dietz16four phases of rehabilitation, this report explores
potential needs of patients and possible methods which
Vol. 60
will help patients adapt to the disease and the effects of
treatment.
General Principles of Cancer Rehabilitation
Throughout the phases of the disease-treatment, re-
mission, cure and death-cancer rehabilitation must be
individualized. Whereas certain responses and coping
behaviors are seen in persons faced with life-threatening
illness, each individual will have unique responses and
personal interpretation of the meaning of the illness and
the treatment." Patient and family education also is
essential throughout a rehabilitation program. A patient
with cancer may experience many changes in functional
ability. Improvements in function may occur, as well as
Teaching the patient and the family about
the disease, the treatment and side effects, and the pro-
cedures required to improve, maintain, or support
changes in functions is integral to successful rehabilita-
tion.
Within each stage of rehabilitation physical, emo-
tional, sexual, social, and vocational needs of the patient
should be considered. An individualized care plan for
each person should include aspects of all areas. For ex-
many patients will plan to retire when diagnosis
and treatments begin. Whether or not retirement is in-
dicated will vary and individualized counseling is
needed before major life decisions are made.
In a study by Frank-Stromborg and Wright, ambula-
tory patients diagnosed and undergoing treatment for
cancer identified three physical parameters which had
changed during the course of the disease: level of physi-
cal activity, sleeping habits, and weight." The results of
did not support an assumption that a diagnosis
of cancer produces a marked change in life-style." In
addition to the three physical changes identified by the
sample, body image and economic status also were
found to change during the course of the treatment.
Preventive Phase of Rehabilitation
The preventive phase of cancer rehabilitation is de-
signed to reduce the impact and severity of the expected
disabilities and to assist the individual to learn how to
cope with and manage any disability.6 The patient un-
dergoing total cystectomy and ileal conduit will be used
as an example to discuss the various phases of rehabilita-
tion. During the preventive phase, a person undergoing
surgery for cancer of the bladder would need intensive
preoperative counseling. It is essential that the person
understand the nature of the disease, the rationale for
this type of treatment over others, and the outcome of
the surgery. Many problems can be alleviated or limited
through preoperative counseling. In addition to the
diagnosis of cancer, previous treatments with radiation
therapy or intravesical chemotherapy may have been
No. 3 REHABILITATION
NEEDS + Broadwell 565

FIG.2. Patient in a sitting position shows the changes in the abdomi-

FIG.1. Man after cystectomy for cancer ofthe bladder. Patient is in a nal contours. The folds and creases with the retracted stoma interfere
standing position. The X denotes the preferred stoma site location. with the pouch seal. This man is unable to visualize the stoma in any
The abdominal folds and retracted stoma will make pouching difficult. position.

tried. Surgery may appear to be a “last hope” for cure, near a fold, bony prominence, or scars, it is difficult to
and the surgery may be frightening. The procedure takes keep the pouch in place. Another problem is whether or
hours and results in a stoma draining urine on the ab- not the patient can see the stoma to apply the pouch
domen, a loss of sexual functioning for males, and a long (Figs. 1 and 2). Dependency on family members may be
recovery. The person continues to cope with feelings avoided by proper location of the stoma within the pa-
and fears regarding the cancer diagnosis, and now is tient’s vision and on a smooth abdominal surface. A
faced with feelings regarding the loss of bladder func- flush stoma also creates problems for many patients. A
tion, loss of control of (urinary) elimination, and a stoma which protrudes slightly above the skin is easier to
change in body image. see and thus, to pouch; the skin can be better protected;
The family members also need help during this phase. and leakage is less likely (Figs. 3 and 4). The manage-
Their questions may be similar to the patient’s. The
fears for patients and families may be lessened by a
careful explanation of the surgery and the results.
Knowledge that a caring professional is available to as-
sist postoperatively will help. The Enterostomal Ther-
apy (ET) nurse can provide the preoperative instruc-
tions. However, this is the appropriate time for the on-
cology team to begin planning for the overall
rehabilitation plan for the individual. The ET nurse will
assess the person’s physical capabilities for performing
ostomy care. Special needs may be identified which are
related to other medical diagnoses and treatment plans,
limited vision, limited hand-eye coordination, and so
forth. A family member may be identified as the poten-
tial care provider after discharge. An assessment of the
home would be beneficial in certain instances.
The most important indicator of postoperative recov-
ery and return to presurgical life style and activities is
the placement and construction of the stoma. A poorly
placed stoma leads to major problems in maintaining a
pouch seal. When a urinary pouch leaks, the person FIG. 3. Young woman after vesicostomy. The patient is sitting
cannot cover the wet area. If the stoma is located in or straight. The stoma is retracted with a deep fold underneath.
566 CANCERAugust 1 Supplement 1987
FIG.4.When the patient relaxes, the stoma disappears into abdomi-
nal folds. Maintaining a pouch seal for the duration of the school day is
difficult.
ment of the stoma by the patient is directly linked to the
level of successful return to presurgical lifestyles and
thus to rehabilitation. Many patients who wish to retire
early do so to avoid embarassments of leaking pouches
(or the fear of accidents), the fear of odor, and the fear
that the pouch is visible. Patient teaching, adequate
practice sessions, and posthospitalization assessments
can reduce potential psychosocial problems related to
the ostomy.
Sexual counseling should also be initiated preopera-
tively. Although the surgeon provides information to the
patient on potential or expected changes in sexual func-
tioning, members of the interdisciplinary team will need
to know what has been communicated in order to fol-
low-up with patient questions and concerns. Alterna-
tives may be provided during the preoperative period.
The patient and spouse may have many questions re-
garding the changes which are anticipated from the sur-
gery.
Fisher identified five elements of cancer which affect
sexuality: the biologic process of cancer; the personal
process of accepting the diagnosis; the effects of treat-
ment; the permanent alteration caused by disease and
treatment; and family process of accepting the diag-
nosis. The psychological, sociocultural, and sexual
aspects of a person's personality will influence the reac-
tions to changes associated with cancer and will influ-
ence the coping skills of the person.'* During the pre-
ventive phase, a sexual history should be obtained and
used in planning the appropriate strategies for assisting
the person to adapt to altered sexual functioning.
Aspects which should be considered for other urologic
cancer patients during the preventive phase include
careful explanation (more than once) of the disease, the
treatment plan, and side effects. Prevention of impaired
Vol. 60
function may depend on early intervention of side ef-
fects of radiation therapy or antineoplastic agents. Pa-
tients with prostatic cancers need to understand the ef-
fects of hormonal therapy. Financial concerns are asso-
ciated with loss of employment due to absenteeism; high
costs of hospitalizations, medications, and prosthetic
equipments; and loss of insurance.13
Restorative Phase of Rehabilitation
The restorative phase of cancer rehabilitation is de-
signed to return the patient to a preillness level of func-
tioning without residual disabilities from or related to
the treatment or disease. In planning care in this phase,
it is necessary to consider any existing disabilities or
limitations, to establish realistic goals with the patient
and family, and to develop a reasonable schedule for
implementing the care and teaching required. The pa-
tient with an ileal conduit needs time to observe and
participate in self-care before discharge. Follow-up
teaching may be required in the home or outpatient
facility. It is evident that new techniques must be
learned to manage an ostomy. The amount of time re-
quired will vary with age, mental status, motivation,
communication factors, physical limitations (vision, ar-
thritis), and other individual considerations. Economic
factors of prospective payment systems may limit the
amount of time patients are hospitalized. Teaching will
need to be continued and be provided for outpatients. In
addition, psychosocial adaptation to living with an os-
tomy will not begin until discharge. The change in body
image, the fears of acceptance by spouse, friends, and
family, the fears of leakage and odor, and the fear of
cancer are not limited to one phase. Counseling will
need to be ongoing. Patients experience shifting emo-
tional reactions. One day patients may accept the
changes and limitations imposed by the surgery, and the
next day experience anger or depression.
Hurny and Holland14 reported on adaptation of
cancer patients with data collected on the tenth, thir-
tieth, and sixtieth days after discharge from the hospital.
Fifty percent of the sample had stomas. Before discharge
and for the first 60 days the people with ostomies fo-
cused almost exclusively on stoma management. Con-
cerns about life and death began to surface after this
60-day period. This study indicates a need for regular
contact with health care professionals during this time
frame. The ET nurse may be the most appropriate per-
son since the key issue is management of the stoma.
In 1982, the International Association for Enterosto-
ma1 Therapy (IAET) conducted a research study which
involved data collection from physicians, administra-
tors, patients, and practicing ET nurses in order to iden-
tify the needs of patients after ostomy surgery, the level
of rehabilitation, the opinions of physicians and admin-
No. 3 REHABILITATION
NEEDS
istrators regarding the ET nursing services, and the fu-
ture of the ET nurse's role.15 One area of concern in the
study was the needs of patients after discharge from the
hospital. The report concluded the following: (1) 66% of
ostomy patients who had ET nurses involved in their
hospitalization saw the ET nurse as outpatients; (2) 9%
of ET nurse's time was spent with outpatients; ( 3 ) 72%
of ET nurses would like to increase the amount of time
which could be spent with outpatients; and (4)79% of
the administrators indicated that ET nurses in their in-
stitution could see outpatients.
The study also concluded that potential services could
be provided by ET nurses in outpatient settings which
would reduce the number of hospitalized days. Potential
services included preoperative teaching and stoma site
selection before admission; postoperative follow-up to
prevent complications and continue teaching associated
with earlier hospital discharges; and coordinate transi-
tion between home, hospital, and extended care facili-
ties or home care ~ r 0 g r a m s . The
l ~ IAET study was con-
ducted before the institution of prospective pricing sys-
tem. Cost savings which were identified when the ET
nurse is involved in the care of patients included (1)
patients are discharged three days earlier, and (2) costs of
ostomy equipment are lowered.
In addition to the preoperative counseling and teach-
ing by ET nurses, an ostomy visitor is very helpful after
surgery. A visitor should be around the age of the pa-
tient, the same sex, and have had similar surgery. Visi-
tors are carefully trained by a joint American Cancer
Society (ACS) and United Ostomy Association (UOA)
Program. Discretion should be used in sending a patient
who has not gone through the training program to see
another patient. The visitors demonstrate visually that
people live with and adjust to an ostomy and that people
do survive cancer therapy. Self-help groups, such as the
UOA, are organized outside the sphere of institutional
or professional authority to support and help each indi-
vidual member.16Four services are provided by self-help
groups: promoting adaptation through the development
of problem-solving behaviors; encouraging and moti-
vating individuals to maintain a regimen; supporting
individuals in resuming an active role in society; and
educating professionals and the public about the needs
of group members."
Success in the restorative phase may be evaluated by
the individuals themselves. Success rehabilitation would
occur when patients return to previous activities they
enjoy and often use in validating their self-worth. Pa-
tients return to being people, not patients.
Supportive Phase of Rehabilitation
The supportive phase is characterized by persistance
of the disease, continued need for treatment, and
- Broadwell 567
changes in functional ability. The rehabilitation goal is
to limit functional changes and provide support to re-
duce any disabilities or loss of function. The needs of
patients will vary during this phase. Patients may need
to learn new ways of changing ostomy appliances or
have assistance. Mobility of patients may alter and
walkers or wheelchairs may become necessary. Teaching
programs focus on the training of patients for adapta-
tion to the reduction of function. Financial, vocational,
and social limitations may develop.
Home care may be of value to the patient and family.
A nurse, after a careful evaluation of the home, may be
able to plan strategies which will promote independence
and limit the effects of the loss of functional abilities.
Supportive management in the home include assess-
ment of the home; provision of equipment necessary for
physical care; evaluation of nutrition, mobility and rec-
reation; and identification of effective symptom man-
agement for pain, anorexia, nausea and vomiting, and
skin integrity."
Legge and Reilly analyzed the outcomes of 36 patients
with cancer in a home care program." The outcomes
measured included functional status, hospitalization,
and reasons for discharge from the program. The results
of the study indicated a shift toward increased depen-
dency, with a decline in health and functional abilities.
The nursing care provided support for the patient and
family during the period. Hospitalization for loss of
functional ability was decreased. Whereas 58% of the
patients in the study died, 30%stabilized and 12%were
admitted to hospitals or skilled nursing care facilities."
Palliative Phase of Rehabilitation
The palliative phase consists of increasing loss of
function. The goal of palliative therapy may consist of
measures which eliminate or reduce complications of
the disease process, provide comfort, and provide emo-
tional support for the patient and family. Symptom
management, particularly pain management, may be a
major area of concern for patients and families. Inde-
pendent function in certain areas can be promoted,
while dependence may increase in other areas. Home
care may be an option for the family. As the disease
process progresses and the patient's condition deterio-
rates, hospice support may be beneficial.
Summary
Four phases of cancer rehabilitation have been identi-
fied: preventive, restorative, supportive, and palliative.
Planned rehabilitation for the person with cancer should
consider the needs of the individual from a physical,
568 August 1 Supplement 1987
CANCER
emotional, social, sexual, and vocational perspective.
An interdisciplinary team of doctors, nurses, social
workers, and therapists should be available to assess,
plan, implement, and evaluate a comprehensive rehabil-
itation program. The plan will need to reflect changes
which occur throughout the trajectory of the cancer
diagnosis and treatment.
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