ABSTRACT
The
relationship between therapeutic recreation and palliation
is examined as a treatment modality for the advanced cancer
patient. Therapeutic recreation appears to contribute to palliation
by providing the dying patient with an opportunity to maintain
quality of life through an increased sense of control, social
interaction, social supports, the accomplishment of task oriented
goals, and by providing an appropriate medium for the expression
of feelings as well as creativity. Palliation is a concept
that has the potential to become a driving force in the treatment
of all illnesses or disabilities in the healthcare profession
from the time an initial diagnosis is made.
ACKNOWLEDGMENTS
Most of all
the student wishes to thank all of the patients at Calvary
Hospital who inspired this study. Many helped by participating
in preliminary surveys and by offering their feedback on how
therapeutic recreation helped them cop e with cancer. One patient,
Barbara, agreed to participate in this study as a case example.
She was a former teacher who valued learning and said that
she wanted to help increase the body of knowledge in any way
that she could. She tried "new things" in therapeutic
recreation and was pleased as well as proud to share her experiences.
Next, the
student wishes to thank his co-workers at Calvary Hospital
who offered suggestions, criticisms and support throughout
this project. The departments of Therapeutic Recreation, Medicine,
Nursing, Social Work, Palliative Care, Pastoral Care and the
Medical Library cannot be thanked enough.
The student
also wishes to thank Lehman College and Dr. Robin Kunstler
for the opportunity to undertake this study. Finally, the student
wishes to thank his spouse, family and friends for their patience
and feedback throughout the whole process.
CHAPTER
I
INTRODUCTION
Therapeutic
recreation(TR) professionals, traditionally concerned with
the quality and potential of human life, face a difficult challenge
in providing TR in settings that serve people with life threatening
illnesses such as advanced or end-stage cancer (Connolly, 1993).
Despite all of the technological advances in medical treatment
in the latter part of the twentieth century, some cancers cannot
be cured, but treatment for pain and emotional suffering must
continue(Cimino, 1997).
According
to the National Cancer Institute(NCI), cancer affects people
from all cultures, socio-economic classes, ages, and backgrounds
(CNN, 1997). More than 1.2 million Americans are diagnosed
with cancer each year and no less than 500,000 die from the
disease annually (CNN, 1997). Treatment often involves surgery,
radiation, and chemotherapy. The disease and subsequent treatments
can be painful and uncomfortable. It is natural for anyone
facing cancer to be concerned with what the future holds. Understanding
the nature of cancer and what to expect can help patients and
their loved ones plan treatment, anticipate lifestyle changes
and make quality of life and financial decisions (OncoLink,
1997). Cancer patients frequently ask their doctor (or search
on their own) for statistics to answer the question: "What
is my prognosis?" (OncoLink, 1997).
Prognosis
is a statistical prediction of the future course and outcome
of the disease and is the likelihood of recovery (Harpham,
1994). When doctors discuss a patients prognosis, they
are attempting to project what is likely to occur for an individual
patient (Harpham, 1994). The doctor may speak of a favorable
prognosis if the patient is expected to respond well to treatment,
or and unfavorable prognosis if the cancer is likely to be
difficult to control (Harpham, 1994).
For the patient
who does not respond to treatment, or, who is medically determined
to be at the end stage of the disease, being admitted to a
hospital or hospice is a common occurrence. Treatment for the
patient at the terminal or end stage of cancer increasingly
involves an approach called palliative care.
Specifically,
the palliative approach to treatment includes control of pain
and other symptoms while simultaneously addressing the individual
patients psychological, social, and spiritual concerns
in an effort to achieve the best possible quality of life for
the dying patient as well as his or her family (Stjernsward & Colleau,
1996). The psycho-social impact of dying is monumental, involving
the search for meaning, confronting fears, dealing with the
loss of control, and issues of loss (Stjernsward & Colleau,
1996). The dying patient often experiences anger, guilt, disorganization,
isolation, and depression (Rando, 1984).
Therapeutic
recreation contributes to the palliative treatment process
by providing patients with an opportunity to gain a sense of
control, develop new skills, facilitate feelings of self-satisfaction
and enjoyment, as well as a means to appropriately express
emotions (Willets & Sperling, 1983).
The primary
role of therapeutic recreation is to assist patients in the
development of their personal capacity to cope with the disease
process and its subsequent affective symptoms such as psychological
distress and depression (Willets & Sperling, 1983). Therefore,
the role of TR in the treatment of advanced cancer patients
is to support palliative goals.
THE PROBLEM & PURPOSE
OF THE STUDY
The purpose
of this study was to investigate the relationship between TR
and palliation in the treatment of the patient with advanced
cancer in a clinical setting. The problem was to find a causal
attribution between TR and palliation; in that TR contributes
to palliation by reducing or relieving symptoms of the disease,
increasing appropriate functioning, and increasing a patients
ability to cope with dying.
DELIMITATIONS
This study
is delimited to one advanced cancer patient in a New York City
hospital with less than six months to live. The patient was
observed while participating in TR groups, at individual TR
activities and at an interview about the benefits of TR. In
addition, contributing information was drawn from and includes
medical chart documentation and interdisciplinary team feedback.
The patient
was followed from admission for one week to obtain base line
data and was studied with a concentrated focus for the next
two weeks as described above. This is to be a case study where
the numerical identification of the subject is illustrated
by the equation: (N=1).
LIMITATIONS
The average
life expectancy upon admission to Calvary Hospital is usually
less than thirty days and is determined by the fluctuating
health status of the patient, the effects of medication, outside
interference, and the subjectivity of the subjects responses.
Furthermore, it must be stated that a case study is generalizable
to theory, not to populations (Henderson, 1991).
Uncontrolled
variables are numerous because TR is conducted at bedside,
in the day rooms, and in general recreation areas, where physical
conditions such as the temperature, humidity, lighting, and
ambient noise are out of the researchers control. Other
uncontrolled variables include visitors who may join a TR group
at any time; disruptions such as fire drills, and assorted
distractions that may alter or have an unknown effect on desired
outcomes.
Compromises
to internal & external validity are all considered in reference
to the subjective nature of the qualitative data being collected
(Henderson, 1991). Every effort is made to process the data
following each session with documentation, archival records,
participant observation, discussion, interviews and process
notes over a specific period of time(Henderson, 1991). This
includes the in-depth study of the background, variable health
status and/or interactions of the patient in the hospital setting
(Henderson, 1991). In keeping with appropriate case study protocol,
multiple sources of evidence were used to create a chain of
data from which to draw conclusions (Henderson, 1991).
HYPOTHESES
There is
a functional relationship between TR and palliation, where
participation in therapeutic recreation contributes to palliation
in the advanced cancer patient.
DEFINITION
OF TERMS:
PALLIATION
Palliation
is a form of supportive care that is used by health care professionals
when the course of cancer can no longer be significantly altered
by medical interventions(Murphy, Morris, & Lange 1997).
Treatment measures are administered to help the patient maintain
the best possible level of physical, emotional, mental, spiritual
and social life, regardless of how far along the disease has
progressed(Murphy, Morris, & Lange, 1997). Palliative care
is aimed at controlling symptoms and improving the quality
of life in an effort to relieve symptoms, ease distress, and
provide comfort(Murphy, Morris, & Lange, 1997).
TERMINAL
ILLNESS
Terminal
illness, such as advanced cancer, is defined as an illness
that cannot be cured by present day medical technology and
that generally leads to death within a specified period of
time (Turk & Feldman 1992)
THERAPEUTIC
RECREATION
For the purpose
of this paper, the definition of therapeutic recreation as
written by the American Therapeutic Recreation Association
will be used.
Therapeutic
recreation is:
- "The
provision of treatment services and the provision of recreation
services to persons with illnesses or disabling conditions.
The primary purpose of treatment services which is often
referred to as recreation therapy, is to restore, remediate,
or rehabilitate, in order to improve functioning and independence
as well as to reduce or eliminate the effects of illness
or disability. The primary purpose of recreation services
is to provide recreation resources and opportunities in order
to improve health and well being. Therapeutic recreation
is provided by professionals who are trained and certified,
registered and/or licensed to provide therapeutic recreation" (ATRA,
1997).
This papers
focus, palliation, is alluded to in the ATRA definition with
the therapeutic recreation goal: "to improve functioning
and independence, as well as reduce or eliminate the effects
of illness or disability" (ATRA, 1997) This goal can have
a palliative outcome.
CHAPTER
II
REVIEW OF
LITERATURE
The relationship
between therapeutic recreation and palliation in the treatment
of the terminally ill cancer patient is the focus of this paper.
There is very little in the therapeutic recreation literature
on the use of therapeutic recreation in settings that serve
the terminally ill. Connolly (1993) points out that although
society has the tendency to abandon individuals with life threatening
illnesses, TR professionals, traditionally concerned with the
quality and potential of human life, need to face the realities
of new illnesses and conditions that threaten life despite
technological advances, and not lessen the quality of that
life. This review of literature will discuss palliation, the
psycho-social impact of dying, the role of TR, and the quality
of life.
PALLIATION
In 1995 the
American Board of Internal Medicine, Clinical Competence Program
distributed the following description of palliative care: at
the "Conference on Care Near the End of Life"
- "Palliative
care is the active total care of patients whose disease is
not responsive to curative treatment. Control of pain, of
other symptoms, and of psychological, social, and spiritual
problems is paramount. The goal of palliative care is achievement
of the best possible quality of life for patients and their
families. Many aspects of palliative care are also applicable
earlier in the course of the illness, in conjunction with
anti-cancer treatment."(Cimino, 1997)
The World
Health Organization (WHO) noted in 1993 that in certain member
states there still appeared to be uncertainty about palliation,
and therefore, stated that:
- "Palliative
care affirms life and regards dying as a normal process.
It neither hastens nor postpones death; it provides relief
from pain and other distressing symptoms; it integrates the
psychological and spiritual aspects of patient care; it offers
a support system to help patients live as actively as possible
until death; and offers a support system to help the family
cope during the patients illness and in their own bereavement" (Cimino,
1997).
THE PSYCHO-SOCIAL
IMPACT OF DYING
Kubler-Ross(1969),
the foremost authority on death and dying, was one of the first
professionals to address this taboo subject. She interviewed
many dying patients and discovered five stages of death and
dying. These were (1) denial and self isolation; (2) anger;
(3) bargaining; (4) depression and (5) acceptance (Kubler-Ross,
1969). She also recognized a universal fear of death, hope,
a search for meaning, and a resurgence of spirituality (Kubler-Ross
1969).
The terminally
ill all grieve their own death and the loss of family, friends,
love and life. Kavanaugh (1972) categorized the grieving process
into seven emotional states: (1) shock; (2) disorganization;
(3) volatile emotions (4) guilt; (5) loss and loneliness; (6)
relief; and (7) resentment.
According
to Rando (1984), it is common for the dying patient to experience
rejection, isolation, anger, anxiety, and feelings of abandonment.
The patient usually begins to employ ego-coping mechanisms
including repression, denial, rationalization, projection,
intellectualization, and obsessive-compulsive behaviors.
Taylor (1992)
examined the search for meaning among persons living with cancer.
This was a cross-sectional study of 74 recurrent cancer patients.
The following standardized scales were used in the study: (1)
the Purpose of Life Scale; (2) Symptom Distress Scale; (3)
Enforced Social Dependency Scale; (4) and the Psycho-social
Adjustment to Illness Scale. Ten of these subjects also received
semi-structured interviews which provided in depth qualitative
data suggesting that persons experiencing negative or unexpected
life events, such as cancer, reported a search for the meaning
of life. The findings indicated that adjustment to illness
was positively correlated with a sense of meaning.
In another
study, conducted in 1993, of 195 women, it was found that causal
thinking and perceptions of control were associated with the
psycho-social adjustment of women with breast cancer (Lowery,
Jacobsen, Ducette, 1993). The findings indicated that clinicians
who work with cancer patients should be alert to possible adjustment
problems because perceived loss of control is a predictor of
psychological distress(Lowery, Jacobsen, Ducette, 1993).
Cohen coined
the term "psycho-social morbidity" to describe the
negative influences triggered by cancer(Aaronsen & Beckman,
1987). A malignancy is a massive assault on the physical and
psychological integrity of the person (Aaronson & Beckman,
1987). It includes the distress the patient experiences at
all stages of the disease beginning with a diagnosis of malignancy,
through death. For the patient, the combination of surgery,
radiation, chemotherapy, or the choice of receiving no treatment,
each present special terrors. Functional impairment or disfigurement
from cancer, treatment or both is a threat to ones bodily
integrity. Neoplasm (excessive tissue or tumor growth) and
physical sequelae (the disease process)pose a threat to ones
previously held self-concept and frequently necessitate changes
in self-image (Aaronson & Beckman, 1987). Issues of loss
and the development of clinical depression are inevitable.
Aaronsen & Beckman
(1988) refer to the buffering effect of social supports. Their
research findings maintain that the health and mental health
benefits of social supports are evident during periods of high
stress associated with cancer. Social support, a potential
outcome of therapeutic recreation interventions, can be a reserve
or resource, which enables the individual patient to cope more
effectively with the disease process (Aaronsen & Beckman,
1988).
ROLE OF THERAPEUTIC
RECREATION
Given the
above psycho-social issues, the following are four problem
areas of dying patients can be addressed through therapeutic
recreation: 1)Uncertainty: goals are written to increase the
patients psychological comfort and to keep some dimension
of hope alive until the end of life (Rando, 1984); (2)Negative
feelings: goals are written to divert attention away from the
stress and fears associated with the disease in an effort to
reduce anxiety and depression and to address feelings of sorrow,
shame and loneliness (Aaronsen & Beckman, 1987); (3)Control:
goals are written to facilitate a restored sense of control
and accomplishment (Rando, 1984); and (4)threats to self esteem:
goals are written to foster participation in groups enhancing
peer supports, and the opportunity to pursue new and old leisure
interests (Aaronsen & Beckman, 1987).
Willetts
and Sperling (1983), list the goals and objectives of therapeutic
recreation in serving the cancer patient this way: (1)to educate
or re-educate patients in the constructive use of their leisure
time, during hospitalization and/or after discharge; (2)to
eliminate boredom and as a result, to help alleviate stress
and anxiety; (3)to provide a variety of unique recreation and
cultural opportunities to patients; (4)to help patients regain
or reinforce their self esteem through recreation experiences;
(5)to provide emotional and psycho-social support to patients
and their families; (6)to adapt leisure activities for patients,
based on their physical and emotional needs; and (7)to continue,
as much as possible, the patients normal leisure activities
during hospitalization.
Therapeutic
recreation is a useful adjunctive or complementary therapy
for the advanced cancer patient and can produce outcomes which
improve a patients perceived quality of life (Bost & Brown,
1982). Quality of life is the balance between euphoric and
dysphoric feeling states (Aaronsen, Beckman 1987). Physical
illness and impairments from advanced cancer lead to a perceived
reduction in the quality of life, and a notable increase in
anxiety, uncertainty about the future, and other dysphoric
feeling states (Aaronsen, Beckman, 1987). Adaptation to life
with cancer may be relative to the reduction of dysphoric emotions
and the creation of a life situation with adequate resources
for personal gratification(Aaronsen & Beckman, 1987).
An oncology
therapeutic recreation program was established in a 20 bed
clinical research unit at Duke University Medical Center that
provided leisure education, companionship, games, crafts, music,
trips and group activities (Bost & Brown, 1982). Here,
with recently diagnosed patients, therapeutic recreation was
found to be a process which is rehabilitative in nature as
it helps to relieve stress, anxiety, and boredom (Bost & Brown,
1982). It provides outlets for the expression of emotions,
opportunities for socialization, and creativity (Bost & Brown,
1982). The patients are considered survivors and are encouraged
to live their lives as fully as possible (Bost, Brown 1982).
Leisure awareness,
an important concept in therapeutic recreation, is imperative
at the end of the life cycle. Lahey (1993) writes that the
threat of death poses the greatest possible challenge to ones
identity. She states that those leisure pursuits which have
contributed to a persons self-identification will be
particularly meaningful now and can provide a "saving
balance" in the midst of illness (Lahey, 1993). Leisure
education plays an important role in working with advanced
cancer patients. It assists people in gaining and maintaining
leisure activities and experiences that contribute to their
quality of life, to the very end of life (Stensrud, 1993).
Originally
designed to describe the function of leisure in relation to
work, the compensatory theory of leisure suggests that an individual
will seek the opposite type of activity whenever given the
opportunity to avoid their regular routine (Neulinger, 1981).
In a hospital setting, getting to appointments on time and
enduring various treatment regimens such as palliative radiation,
X-rays, bathing, and eating can be like work in that everything
is task oriented. It is, therefore, important to determine
the patients perception of their daily routine and various
appointments in order to make appropriate recreation choices.
The familiarity
theory of leisure assumes that most people work out comfortable
routines for social survival producing a sense of security
(Neulinger, 1981). Advanced cancer is a serious threat to this
and research suggests that the patient no longer has the social
network to experience social recognition, which may lead to
feelings of loneliness, isolation, and boredom (Aaronson & Beckman,
1987). The dying need continued and rewarding interaction with
others as uncertainty brings increased anxiety and fear. Therapeutic
recreation activities can help patients develop comfortable
routines in the hospital and increase opportunities for socialization
and life affirming interaction (Willets & Sperling, 1983).
The personal
community theory further accentuates the social properties
of leisure where an individuals psychological drives
and desire for social contacts with others become satisfied
indirectly through activities shared with friends, family,
and co-workers (Neulinger, 1981). The importance of ones
social support system is crucial to palliation, and therapeutic
recreation can increase social support (Bost & Brown, 1982).
Therapeutic recreation is a modality that can offer patients
the opportunity to engage in leisure based activities individually,
in a group, or in a therapeutic community. Research, done in
a medical model setting, also suggests a positive relationship
between social support and the rehabilitation of a cancer patient
(Aaronsen & Beckman, 1987).
Families
or caregivers may receive TR services in the form of respite,
support, and actual involvement in TR activities with their
loved ones within TR programs. Current oncology therapeutic
recreation programs approach treatment in an eclectic manner
to best address the needs of the patients they serve. One pilot
program studied the value of a pet therapy program for terminal
cancer patients in a nursing home(Muschel, 1984)and found that
the experience of being with the animals had an effect of creating
a sense of relaxation and reducing tension and a reduction
in blood pressure (Muschel, 1984). Using a questionnaire, it
was found that pet therapy increased the comfort and adaptation
of the dying patient(Muschel, 1984).
Research
on the effect of other therapeutic recreation activities such
as the above is needed. Research with adult cancer patients
has shown that patients can be trained in specific relaxation
and stress reduction techniques to control their own anxiety,
and to reduce pain and stress during invasive medical procedures
(Breitbart & Holland, 1993).
The recreation
therapist plays many roles in an oncology setting; assessing
the patients functioning, establishing goals and objectives,
designing an appropriate treatment plan, evaluating each patients
progress and enhancing the patients personal capacity
to cope with the disease process (Willetts & Sperling,
1983). Stensrud (1993) writes:
- "The
therapeutic recreation professional has a responsibility
to address death in order to help people live fully until
they die. It is our responsibility as professional recreation
therapists to address the sensitive subject of death awareness
because we often have the best opportunities to do so. We
are frequently called upon to be the confident of our clients.
We connect with their expressive domains and encourage cathartic
release of emotions through re-creative activities. We are
present at some of the most powerful occasions, when, for
example, the magic of the leisure experience can open a person
to poignant insights." (Stensrud, 1993, p.36)
This can
occur in groups or at bedside through activities that address
life and death issues through symbolism, interaction, and reflection.
Indeed, experiences and insights are difficult to measure but,
as therapists, we are called upon to facilitate the process,
and, hope to be a catalyst in helping patients achieve goals
and receive the benefits of therapeutic recreation.
THERAPEUTIC
RECREATION, PALLIATION AND THE QUALITY OF LIFE
Therapeutic
recreation can improve functioning, increase independence,
address psycho-social issues and reduce the perceived threat
of terminal illness through a choice of leisure activities,
that cause a palliative outcome. Palliative care is a treatment
modality provided for patients who are not curable, in hopes
that treatment interventions will relieve or alleviate symptoms
such as pain and anxiety, without altering the course of the
disease (Stoll, 1986).
There is
very little research in the literature measuring a the causal
relationship between therapeutic recreation and palliation.
Research measuring a patients adjustment to illness and
quality of life, however, is well documented (Aaronson & Beckman
1987). To study the use of therapeutic recreation in a setting
where the quality of life is limited by the ravaging effects
of cancer can be done through case study, quality of life surveys,
patient adjustment to illness surveys, and patient satisfaction
surveys used by researchers studying the quality of life of
cancer patients (McDowell & Newell, 1996).
The case
study (or case history) is found to be useful for collecting
subjective data regarding a single case and the surveys are
useful for the study of large groups of patients (McDowell & Newell,
1996). Given that there are so many uncontrolled variables
in the hospital setting, a case study is considered the best
approach to examine how TR goals and interventions serve the
advanced cancer patient. TR goals and interventions appear
to facilitate palliation when used with advanced cancer patients
in that they help to maintain quality of life (Bost & Brown,
1982). Although there is little scientific evidence as to the
effects of such treatment, the benefits of this approach centers
on improving the quality of life through enhanced psychological
support (Lerner, 1994).
The World
Health Organization noted in 1993 that palliative care affirms
life and regards dying as a normal process (Cimino, 1997).
Palliation provides relief from pain and other distressing
symptoms, offers a psycho-social support system to help patients
live as actively as possible until death, integrates the spiritual
and psychological aspects of patient care, and provides support
to the family during the patients illness and following
their death (Cimino, 1997). Palliation includes the reduction
of pain through medication such as morphine, bereavement services
to the patient and family, unlimited visitation policy, availability
of pastoral care, and holistic and more non-traditional forms
of medicine, as well as therapeutic recreation services.
CHAPTER
III
DESCRIPTION
OF THE SETTING
From its
inception in 1899, the mission of Calvary Hospital has been
to provide palliative care to adult patients in the advanced
stages of cancer, addressing the symptoms of the disease, not
its cure. Calvary Hospital is a voluntary, not-for-profit 200
bed fully accredited specialty hospital that is dedicated to
providing patients with advanced stage cancer a comprehensive
palliative care program that strives to meet the emerging physical,
psycho-social, and spiritual needs of both patients and families
through the provision of inpatient, outpatient and home care
services.
Each patient
has his or her own private room which is equipped with a reclining
wheel chair, television, video cassette player, bulletin board,
bedside table, closet, indirect lighting fixtures, a rolling
beside tray table, visitors chair, a large window sill,
and, a modern electronic hospital bed. The rooms have oxygen
and suction ports built into the wall above the bed. The walls
are decorated with paintings and photographs providing an aesthetically
pleasing environment.
Patients
receive therapeutic recreation services daily. Some attend
groups, others participate only at beside. In 1996 Calvary
Hospital had a total of 2,485 admissions and 2,218 expirations.
The remaining 237 patients were discharged home or to a nursing
home with 96 of those being readmitted. The average length
of stay is 26.5 days, from date of admission to death or discharge.
The median length of stay is 17.0 days. About 890 patients,(35.7%),
had stays of less than nine days.
This patient
lived beyond the average length of stay at Calvary Hospital
given that she was admitted on 8/11/97 and expired on 12/25/97.
In total, she lived at Calvary Hospital about four and one
half months. This fact demonstrates how difficult it can be
to predict life expectancy at the end stage of the illness.
SUBJECT SELECTION
The patient
was chosen out of a pool of 18 other potential subjects who
attended group TR programs at Calvary Hospital up to four or
five times per week. Four patients were told about the study
and were asked if they would like to be involved in the researchers
research project. The patient who was chosen readily agreed
to participate and signed a release. All of the potential subjects
were told in simplified terms that the purpose of the study
was to understand the experiences of an advanced cancer patient
in therapeutic recreation and TRs relationship to palliative
outcomes.
The specific
palliative outcomes observed included active/passive social
interactions, accomplishment of various sequential task oriented
activities during TR, frequency and level of participation
and observed behaviors such as attending to structured activities,
interacting with peers, talking, laughing, and engaging in
self directed activity during TR. The data reflect the sequence,
nature and pattern of the patients engagement in various
recreational activities during her first three weeks of hospitalization.
The timetable
for the study was set for three weeks from the date of admission
to the hospital. Given that the length of stay is usually less
than a month, three weeks seemed like a reasonable amount of
time to study an individual patient.
The first
week was used to establish a baseline which was followed by
two weeks of continued TR interventions. The patient freely
chose which TR programs to attend. Given that the patient continued
to live beyond the study period, a follow up interview regarding
TR was also conducted.
To implement
the study the researcher observed the patient during TR on
a daily basis in a way that was as unobtrusive as possible.
The researcher observed from the back of the room and discreetly
took notes which were later compiled and processed. Every effort
was made to maintain a "normal" patient/therapist
relationship and the patient was observed participating in
TR through a variety of group and individual programs. No special
treatments or extraordinary interventions were provided and
the routine of providing TR was no different for this patient
than that for any other.
DESCRIPTION
OF THE PATIENT
The patient
was a 67 year old female who was admitted to Calvary Hospital
on 8/11/97. She transferred from another hospital due to the
progression and incurable nature of her cancer. She was first
diagnosed with cancer of the larynx in May 1996. At the same
time patient was found to have cancer of the right breast.
She had a lumpectomy but chose to receive no radiation for
it.
The patient
did receive radiation and chemotherapy for the cancer of the
larynx, at which time, a fistula was fixed internally. She
had a complication from the chemotherapy, with cardiac arrest
and had subsequently refused surgery. She agreed to have a
PEG feeding tube put in place; later she experienced greater
difficulty breathing and required a tracheotomy. The patient
developed some form of heart disease and was also seen by a
psychiatrist for suicidal ideation. At time of admission she
appeared more agitated then depressed. She reported some persistent
pain despite use of Percocet.
The patient
was married with two adult daughters. Her general appearance
was that of a well developed, normally nourished woman. She
had a history of heavy alcohol use and smoked two packs of
cigarettes daily. She was selected for the case study shortly
after her admission to the hospital. She was a typical end
stage cancer patient who had arrived from another hospital
to receive palliative treatment. Since her previous hospital
did not provide TR, she needed to be educated about the TR
program, provided with a calendar, told about her choices and
options regarding TR, including the benefits and supports that
can be gained in TR groups.
The patient
was informed of the research project this researcher was doing.
She was told that this researcher was conducting a study to
determine the benefits of Therapeutic Recreation for advanced
cancer patients and that the problem was to determine if TR
contributed to palliation. She was told that this study would
keep her full name confidential and that she could withdraw
from the study at any time. She agreed to participate in the
study and informed the researcher that she was a teacher and
thought that maybe the research could help in some way.
SAMPLE DAILY
PROCESS NOTES
WEEK #1:(8/11/97-8/17/97)
8/11: Admitted
to Calvary Hospital
Today the
patient was admitted. She received visits from all the disciplines
including TR. Upon approach the patient presented as being
dependent on oxygen and short of breath. This was an introductory
visit to briefly orient the patient to TR services.
The therapist/researcher
briefly described available TR programs and how patient could
access the service. She was provided with the daily TR schedule
and told about various self directed options available including
the video player, movie library, games and access to the outdoor
terrace. She seemed polite and mentioned she needed to rest.
She agreed to a follow up visit from TR staff.
8/12: Initial
Assessment Visit, 1:1, 15 min.
The patient
was resting in bed, she had oxygen running, and presented as
being alert, anxious, and irritated. She rapidly scanned the
therapist with actively moving eyes and she expressed a degree
of assertiveness by saying she was not interested in recreation
activities, at least not yet. She asked what day of the week
it was. She appeared to question it being a Tuesday afternoon,
but nodded her head in agreement. She covered her tracheotomy
as she spoke, in barely audible whispers of not being able
to eat, walk, or get out of bed.
She accepted another therapeutic recreation activity schedule, and seemed to
be listening attentively as various programs were described. She clutched her
oxygen line and said that because of it she was unable to do anything, and
would most likely remain in her room. The therapist took this as an opportunity
to explain that if she does begin to feel better she may decide to join a TR
group and that oxygen tanks would be provided. Or, for the time being she could
choose to watch a TR movie in the room, or do a number of various TR activities
in the room.
She appeared
to understand that being involved with recreation was an option
available to her when the need arose. She remarked that she
needed to rest but, agreed to future visits from the TR staff.
Following
a discussion with the patient, which included a review of the
various opportunities she had regarding TR, the goals and objectives
were written on the TR assessment and entered into the medical
record as follows:
GOAL STATEMENT:
To increase socialization.
OBJECTIVE
#1. Pt. will accept daily visits 3-5x weekly. OBJECTIVE
#2. Pt. will attend TR group(s) of her choice 2-3x weekly.
PLAN: Provide
TR services and supports to patient and family. Collaborate
with interdisciplinary team and discuss progress at weekly
team meetings. Bring portable oxygen along to program as needed.
8/15: Horticulture
Program on terrace: 60 minutes.
Today patient
attended the TR horticulture program on the terrace from a
distance. She asked to sit in a shady area away from the group
in an area where other patients usually smoke. She focused
on smoking but was scanning the terrace and appeared to be
taking it all in. Her husband sat near her, carried a paper,
and seemed comfortable as the afternoon progressed.
The patient
also met other patients and seemed to be inquisitive as to
who they were. Most were fellow smokers and smoking behavior
on the terrace is noted here as a chance for the patient to
interact with peers as well as to observe TRs horticulture
group.
WEEK #2 (8/18/97-
8/24/97)
8/18: Supportive
Visit, 1:1, 10 min., Motivational Rounds 1:1, 5 min. Group,
Creative Arts: Puzzle Making, 60 min.
Patient made
an effort to make a cut-out puzzle kit where a blank pre-cut
puzzle is painted with a design of the participants choosing.
The patient had some difficulty manipulating the brush and
acrylic paint, reflective perhaps, of a decline in fine motor
skills as a result of the disease process and/or medication.
Claiming she was no artist, she made a simple design with minimal
assistance but required a recreation therapist to help her
complete the project at bedside the next day.
She worked
alongside other patients and interacted with them in a socially
appropriate fashion. She asked a question about one patient
expressing concern that the patient was absent from the group.
TR was the primary time that the patient was in a group with
other patients. When other patients were not available for
TR, this patient often asked about those who were not in attendance.
She appeared
anxious as evidenced by her standing up and holding on to the
table, yet she made eye contact with concerned staff and assured
them she was "OK" on her feet. Standing attracted
the attention of her peers as most of the patients in attendance
were unable to stand up on their own. Her act of standing seemed
to reflect her desire to achieve a level of independence.
(It should
be noted that the patient had earlier declined a physical therapy
consult to assess her ability to ambulate. Recreation therapy
appeared to be the way she desired to improve her physical
functioning and she told the recreation therapist as much on
several occasions. She eventually was allowed to walk to programs
as long as a staff member or volunteer brought her chair in
tow. Subsequently, on 8/30/97, her doctor wrote an order whereby
she was allowed to ambulate on her to the dayroom, as long
as she agreed to hold on to the hand rail.)
8/22: TR
Group: Horticultural Therapy-Dish Gardens, 90. min.
Patient had
no visitors and accepted an invitation to attend Horticulture.
The project was to make a dish garden where the patient selects
a ceramic dish, assorted house plants, and the items needed
to make a mini-garden.
The patient
said that she had no luck with plants. She said everything
she ever grew died. The therapist explained that this was a
project that could be used as a gift. The concept of the living
legacy of plants was also discussed. This is the idea that
the plants can actually be a living legacy of the person who
planted them.
The patient
made two planters independently. It seemed that her fine motor
skills using small hand garden tools were adequate for this
activity. Although this was a sequential task oriented process,
it did not require exacting techniques of Arts & Crafts
and she did quite well planning and planting her dish gardens.
She carefully added drainage material, soil, water and small
plants into the container with little difficulty. She wore
gloves as she mixed the soil and her eyes continually darted
about the room. She stood to do up her project and she balanced
herself against the table. Staff came over to her to make sure
she was stable and she seemed annoyed by their presence.
The patient
said she was going to give one of her dish gardens to her daughter
in Philadelphia who "loves plants". She planned to
keep one in her room to try her luck once again with growing
plants.
WEEK #3:(8/25/97-8/30/97)
8/25: Supportive
Visit, 1:1, 15 min., Relaxation Group 60 min.
Today the
patient attended the relaxation and movement group. This program
incorporates guided imagery with relaxation and movement of
the upper body. The patient joined the group in a circle and
held on to the parachute as it gently floated as instructed.
She participated for about 60 minutes before returning up to
her unit for a smoke. For one hour the patient had not had
a cigarette but it seemed that smoking was an important aspect
to her quality of life. Smoking perhaps gave her an added element
of control, something to do on her own following TR.
8/26: Life
Review, 1:1, 15 min.
Today the
patient accepted a one to one visit which is used to help patients
realize a life affirming continuum. The patient shared some
aspects of her past. She reflected on her years as a teacher,
mother, and one who always felt she could have done more. She
claimed to have once considered going back to school for social
work and lamented it was now too late. Her leisure apparently
was centered on her family. Her history of smoking and drinking
did not come up in the conversation. During this visit the
patient used a pad and pencil to communicate. She was having
trouble with incessant coughing and oral verbalization was
minimal. The therapist encouraged her to go to bingo once again
and assured her somebody would assist her to call out Bingo
if she won a game.
Table 1:
TR interventions during the three week study period is presented
below:
CONCLUSION
Therapeutic
recreation and therapeutic recreation activities appeared to
contribute to palliation in treatment of this advanced cancer
patient. TR interventions helped the patient increase her sense
of accomplishment, reduced her depression, minimized her threats
to self esteem, and put real fears in perspective. TR alleviated
or reduced her distress and anxiety through outcome based TR
interventions that increased psychological support, decreased
social isolation, promoted socialization, rebuilt self esteem,
increased independence, and maximized functioning making it
a vital and integral treatment in a palliative care environment.
Following
her admission to the hospital the patient accepted supportive
visits from the TR team and was attending group activities
within several days. She achieved her TR goal as evidenced
by her acceptance of daily socialization visits 3-5 times weekly
and her attendance at TR programs off the unit 2-3 times a
week as well. During the first week, or baseline phase of the
study, the patient attended three TR programs: arts & crafts,
group games and creative arts. She accepted eight bedside visits
of which four were motivational rounds, two were supportive
visits, one was an assessment visit and one was a bedside reality
orientation session.
During the
next two weeks the patient attended TR groups on all but two
of the days. She tried every program being offered during this
time and engaged in some self directed socialization activity
(sitting on the outdoor terrace during TR, not participating
in the planned activity, talking and interacting with peers.)
Therapeutic
recreation helped the patient maintain a relatively independent
quality of life. During this three week study the patient made
many independent choices about which programs she would attend.
She developed supportive relationships with peers during TR.
This illustrates the research of Aaronson & Beckman, (1987)
who conducted studies regarding how the buffering effect of
social interactions help a cancer patient cope more effectively
with the disease process.
Psycho-social
supports helped the patient deal with self isolation. The patient
chose certain days not to attend any recreation program and
in a sense, isolated herself from the group. This self isolatory
behavior can be expected and is discussed in the literature
by both Rando, (1984)and Kubler-Ross (1970). Most days, however,
she accepted a supportive socialization visit from the recreation
therapist and later that day chose to be present during recreation
programs. The fact that she did not always engage in the structured
activity reflects an element of personal decision making and
illustrates her ability to maintain a continuum of self directed
activity.
The threat
of death posed a threat to the patients identity. Her
acceptance of death and the dying process itself is reflected
by the patients need to give away or leave behind numerous
projects that she made during TR. By providing her loved ones
with "gifts" she made in TR, the patient demonstrated
her personal acceptance of her impending death through disengagement.
The literature speaks of patients needing to finalize their
lives. TR helped this patient achieve life closure with dignity
and with her self identity intact.
According
to the literature, cancer patients face depression throughout
the course of their illness. TR provided a way for the patient
to put her "sadness" on hold. She never used the
word depressed but she exhibited sadness from time to time.
The patient was able to focus on many activities that gave
her the opportunity to set depressive emotions aside. She quietly
grieved for patients she had met during TR who died before
her. Regardless, in TR, she continued to establish new relationships
with other patients and actively engaged in social interaction.
This appears to have helped her emotional functioning given
that TR provided her with opportunities to express her emotions
in a socially appropriate way.
Loneliness
is another consequence of the disease that has been addressed
by the literature and is reduced by TR. The psycho-social supports
provided by individual and group intervention reduces the stresses
associated with dying. The patients involvement in TR
provided a means to achieve palliation where, by virtue of
being involved in TR programs, she was able to compare herself
to other patients and realize that she was not alone in her
situation.
Boredom is
also a psycho-social symptom of the disease (Murphy, Morris & Lange,
1997). The patient was able to reduce boredom through TR using
the acquisition of new leisure skills such as ceramics and
horticulture. Although the patient struggled with certain projects
that required a level of fine motor coordination, she was able
to" work" on these projects and over time finished
everything she started. This gave her a sense of purpose and
meaning which the authors Taylor (1992) and Stensrud (1993)
both cite as being very important for palliation.
Cultural
enrichment through group interaction occurs in TR. This enhances
and promotes palliation for this patient. She became friendly
with a number of other patients from culturally diverse populations.
She demonstrated interest in learning about other cultures.
The patient found this to be an opportunity to become involved
with others. Whether being outside on the terrace or in a TR
group on the unit, she was "involved" which allowed
her to be distracted from her own demise. This effectively
alleviates or reduces the anxiety associated with her own illness.
For the patient, this helped her regain self esteem. Interactions
in TR let the patient give and receive emotional and psycho-social
support.
The patients
independence was improved in part due to TR. Through TR the
patient began to engage in self directed leisure activity,
often with peers. The patient was admitted on oxygen and needed
to be wheeled everywhere. In TR she literally stood up and
found her feet again. She eventually convinced her doctor that
she should be allowed to walk to the day room independently
for recreation. Eventually she went on her own even when no
formal program was being run. This would later (about 8 weeks
post admission) lead to her engaging in her own leisure activities,
unsupervised, in the evenings while all other patients were
sleeping.
She needed
contact, to be able to touch others, to voice concerns openly,
which was difficult at times because her tracheotomy. She communicated
by placing her right index finger over the opening, and whispered
in a barely audible voice. Then she would reach out and touch.
TR helped
the patient deal with loss. The adjustment to cancer always
involves loss and impending loss. TR enabled the patients
ego-coping mechanisms. It promoted her self esteem, gave her
control, and helped her deal with obsessive compulsive behaviors
such as smoking where she could engage in TR and wait for another
cigarette.
The loss
of control is another symptom that has been addressed here
by TR. The patient was able to complete several projects, maintain
peer relationships, and confront uncertainty through the support
system provided by TR. This seems to support the findings of
Aaronsen & Beckman, (1987) that the dying need rewarding
and continued social interaction to reduce uncertainty, anxiety,
and fear.
Negative
feelings are also addressed and this seems to support Nuelingers
personal community in leisure theory (Neulinger, 1981). The
TR group provided a personal therapeutic community where the
patient was able to confront the fear of death and other negative
feelings. She was able to redirect and focus on what she was
still able to accomplish.
Research
by Rando (1981) indicated that the dying patient feels a need
to accomplish something daily, even a small task. The patient
here demonstrated this on several occasions and often took
days to complete a task, a little bit each day. This has a
palliative benefit in that the patient feels better having
accomplished something.
The Calvary
Hospital Assessment was conducted within 72 hours of admission
and was used as an initial assessment of the patient. The fact
that while communicating she had to whisper while covering
her tracheotomy with her fingers was not mentioned on the assessment.
This is because this information was found elsewhere in the
chart and it is hospital policy not to duplicate information.
Therapeutic
recreation professionals face a difficult challenge when working
with patients who are at the end stage of life. The common
denominator may be terminal illness for any given patient,
but the challenge is addressing all of the various needs
that the dying patient has. Often, upon first approach the
therapist is told by the patient or a family member that there
is no "need for recreation". The response must always
be one of hope. The therapist must educate the patient about
the importance of social interaction. Explaining the palliative
benefits of TR is an important aspect to establishing a therapeutic
relationship with the patient. This does not mean that the
therapist must start quoting the various theories discussed
in the literature but, rather, the actual programs and opportunities
available to the patient. The therapist must also state that
he or she will return on a regular basis. This builds rapport
and promotes interest in TR.
The patients
biggest need was, perhaps, the need to have a dignified death.
This was addressed by TR through her social interactions and
a continuance of care. Once a relationship was established
between the therapist and the dying patient, the therapist
continued to monitor, assess, and provide TR interventions
as appropriate.
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All rights reserved to the author, Charles Sourby.
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