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MICHIGAN STATE UNIV

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This is to certify that the

thesis entitled

ASSISTANCE NEEDED BY CANCER PATIENTS
DURING THEIR LAST FOUR WEEKS OF LIFE AND
USE OF HOSPICE SERVICES

presented by

Lynn M. Swick

has been accepted towards fulfillment
of the requirements for

Master of Science degree in Nursing

 

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5/19/92

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ASSISTANCE NEEDED BY CANCER PATIENTS
DURING THEIR LAST FOUR HEEKS OF LIFE AND
USE OF HOSPICE SERVICES

By

Lynn Marie Swick

A THESIS

Submitted to
Michigan State University
in partial fulfillment of the requirements
for the degree of

MASTER OF SCIENCE IN NURSING

College of Nursing
1992

3’35" 0

<22." /
‘x| ._
: v

 

ABSTRACT
ASSISTANCE NEEDED BY CANCER PATIENTS

DURING THEIR LAST FOUR HEEKS OF LIFE AND
USE OF HOSPICE SERVICES

By

Lynn Marie Swick

This descriptive study was based on data obtained as part of the
longitudinal studies, ”Family Homecare for Cancer--A Community-Based
Model" funded by the National Center for Nursing Research (grant #l-ROI-
NR01915) and grant #PBR-32, "Family Homecare for Cancer Patients" funded
by the American Cancer Society.

Assistance needed during the last four weeks of life in activities
of daily living, instrumental activities of daily living, and health
care activities were examined along with patterns of hospice use at time
of death in a sample of 123 cancer patients. Data was obtained through
interviews conducted with bereaved caregivers of cancer patients.

The data supported high levels of assistance needed in AOL
activities during the four weeks of life. Hospice users had
significantly more limitations, than hospice non-users, in activities of
daily living, certain instrumental activities of daily living, and

health care assistance needs.

 

ACKNOHLEDGENENTS

Many thanks to my committee members, Drs. Barbara Given, Manfred
Stommel, Sharon King, and Clare Collins for their guidance throughout
this research and to Drs. Barbara and C.H. Given for their assistance
and use of their data obtained as part of the Family Homecare for Cancer
Studies. A

I also extend my sincere appreciation and thanks to my family and
friends for their support and patience during the pursuit and completion

of the Master's thesis and degree.

TABLE OF CONTENTS

Page
CHAPTER I
Introduction ............................ 1
Purpose ............................... 3
Research Questions ......................... 4
Overview .............................. 7
CHAPTER II
Conceptual Framework ........................ 8
Definitions ............................. 8
Overview of the Theory ....................... 11
Limitations ............................. 21
CHAPTER 111
Review of the Literature ...................... 22
ADL, IADL and HCA Assistance .................... 22
Hospice Use ............................. 29
CHAPTER IV
Methods ............................... 36
Sample ............................... 38
Operational Definitions ....................... 38
Scoring ............................... 41
Validity and Reliability ...................... 42
Analysis .............................. 42
CHAPTER V
Analysis .............................. 45

iv

Sample Characteristics ....................... 45

Question #1 ............................. 52
Question #2 . . . . . . . ...................... 56
Question #3 ............................. 58
CHAPTER VI

Interpretation ........................... 62
Methodological Limitations ..................... 64
Discussion of Theoretical Model ................... 66
Comparison to Previous Research ................... 67
Implications for Nursing Practice .................. 70
CNS Management Plan ......................... 71
Recommendations for Further Research ................ 76
REFERENCES ............................. 81
APPENDICES

Appendix A: Consent Forms ..................... 87
Appendix B: Involvement Instrument ................. 89
Appendix C: Human Subject letter ................... 93

Table

Table

Table

Table

Table

Table

Table

Table

Table

Table

10:

LIST OF TABLES

Setting of Death and Hours of Care for

Hospice Users, Non-Users, and Total Sample ......

Patients' and Caregivers' Age and Sex for

Bereaved Sample and Subgroups .............

Patient Relationship to Caregiver - Frequencies

and Percentages for Bereaved Sample and Subgroups . . .

Patients' Primary Cancer by Site - Frequencies
and Percentages for Bereaved Sample and Subgroups .

Items used in ADL, IADL, and HCA Scales and

Alpha Coefficients ..................

Frequencies and Percentages of Assistance

Needs in ADL, IADL, and HCA Items ...........

Comparison of Mean Scale Scores and Standard

Deviations for ADL, IADL, HCA and Total Activities

for Hospice Users and Non-Users ............

Frequencies of Hospice Use and Non-Use and Types

of Hospice Services Used at Time of Patients' Death . .

ANOVA's for Categories of ADL, IADL, and HCA and

Total Activities and Hospice Use ...........

ANOVA for Hours of Care ................

vi

. 46

. 47

. 48

. 50

51

53

54

. 57

. 60

Figure 1:
Figure 2:
Figure 3:
Figure 4:

am! ‘.-

LIST OF FIGURES

Andersen/Newman Health Service Utilization Framework . . 12
Individual Determinants of Health Service Utilization . . 18
Individual Determinants and Service Use ......... 20

ADL, IADL, and HCA Items ................ 39

vii

CHAPTER I
Introduction

Cancer is becoming known as a chronic disease due to advances in
treatment modalities that increase the numbers of cancer patients
surviving five years or more and increase the percentage of persons over
55 years of age with cancer. In the United States three out of four
families will, at some time, be affected by cancer and of every five
deaths in the U.S., one is from cancer (American Cancer Society, 1991).

Unfortunately, cancer reaches a terminal stage in many of those
afflicted. The trend towards increasing home care and early hospital
discharge, along with patient and caregiver preferences, is shifting the
arena of terminal cancer care to the home and family members (Dobratz,
1990; Mor & Masterson-Allen, 1990; Mor, Guadagnoli, & "001, 1988). In a
majority of cases this care is provided in the home by spouses with sons
and daughters comprising the next major group of caregivers (Mor, 1988;
Hinds, 1985; Oberst et al., 1989). The type of assistance that may be
provided by family members or friends may range from the provision of
actual physical care to helping with chores around the house. This type
of help is known as informal assistance.

In some situations formal services, or assistance as provided
through agencies, are utilized along with informal assistance to give
better care to family members within the home. Types of formal services
include respite care, visiting nurse services or chore and housekeeping
services, to name a few. Hospice services are a type of formal service
that may be utilized by patients with advanced cancer who stay within

the home.

2

Hospice is a concept of care that focuses on making clients as
pain and symptom-free as possible during their last stages of an
incurable illness. Their services are directed towards quality of life
and optimum functioning and are available to clients given a prognosis
of six months or less of life. These services are for those clients who
have a primary caregiver and who wish to remain in the home during their
final days of life. Their services are directed at palliation, not cure
(Mor, Greer, & Kastenbaum, 1988; Petrosino, 1986).

Support services from health care agencies can be a valuable
supplement to homecare provided by the family but may or may not be
utilized for a variety of reasons including lack of need, availability,.
accessibility and affordability (Lauer, et al., 1986; Mor, Guadagnoli, &
Nool, 1988). Caregivers' educational level and psychological state may
also influence service use (Collins, Stommel, Given, & King, 1991).

As cancer patients' independent functioning decreases, their need
for assistance increases in personal care activities and instrumental
activities such as cooking or shopping (Mor, Guadagnoli, & Nool, 1988;
Grobe, Ahmann, & Ilstrup, 1981; Greer et al., 1986). Houts et al.,
(1988) data supports a marked difference in needs of persons with cancer
related to activities of daily living which were almost three times as
frequent in the terminal period as in the period just after diagnosis.

The literature that addresses self-care, instrumental activities
of daily living and health care activities of cancer patients is sparse.
Very few have investigated these specific areas during the terminal
cancer period and none have been found that describe the majority of
ADL, IADL and HCA's of terminal cancer patients and their use of hospice

services. Mor and associates have gathered the most data that would

3
possibly rate to this topic area as part of the National Hospice Study,
but it did not include caregiver's perceptions of patient's needs for
assistance in ADL, IADL and HCA's. Grobe, Ahmann, & Ilstrup (1982),
surveyed families of terminally ill cancer patients but only inquired
about a limited number of care activities to determine a community's
need for service programs such as hospice services.

Home care, or assistance with ADL, IADL and HCAs, is being
provided by family members who consider themselves primary caregivers to
cancer patients (Hileman & Lackey, 1990). To better assist these care
providers, more studies need to describe the particular areas of
assistance that caregivers view as problematic. Thus, caregivers might
become better prepared for the task of caring for terminally ill family
members in a homecare situation.

To benefit patients, caregivers, and the health care system, there
needs to be more documentation regarding the assistance with personal
care of the cancer patient (activities of daily living or ADL). ADL
assistance is most needed particularly during the terminal phase of
cancer (Burns & Carney, 1985). It would also be beneficial to know what
types of assistance is needed with instrumental activities of daily
living (IADL) and health care activities (HCA) such as assistance with
medications, dressing changes, ostomy care, etc., during the terminal
phase.

Purpose

The purpose of this research is to examine cancer patients' needs
for assistance in activities of daily living, instrumental activities of
daily living, and health care activities during their last four weeks of

life and their use of hospice services at the time of death.

Research Questions

The questions this researcher seeks to answer are: I) What are
cancer patients' functional limitations in ADL and IADL and HCA
assistance needs during their last four weeks of life?; 2) Are hospice
services utilized at time of death and, if so, what types?; and 3) Is
there a difference between hospice users and non—users with respect to
their assistance needs at the time of their death?

Patient ADL, IADL and HCA need for assistance along with hospice
service utilization are the key variables to be examined. Descriptive
information, such as demographic characteristics (caregiver and patient
age, sex, and patient relationship to caregiver), will be examined as
well as patients' primary cancer site and hours of care to provide a
more in-depth profile of hospice users and non-users at time of
patients' death and more accurately depict a cancer home care situation.

This study is not an attempt to identify all the variables that
influence the types of assistance that may, or may not, be needed by
cancer patients during their last four weeks. It is assumed that
assistance needed is specifically related to cancer, however, other
chronic or acute medical conditions may impact the patient's dependency
at this time. It is beyond the scope of this study to make a
distinction between the presence and impact of other chronic illnesses
as opposed to cancers' impact on patients' functional level and HCA
assistance needs during their last four weeks of life.

There are other factors that may influence service use, including
hospice service utilization. Prigerson (1991) argued that it was the
influence of the physician and the patient's primary caregiver who had

the greater impact on the patient's receipt of hospice services. Belief

5
in the philosophy of hospice and the desires of patients to experience
their final days in their own homes certainly influence whether they
shall enlist the services of hospice. Patients' and caregivers'
knowledge of the services that hospice and home health care agencies
provide to care for cancer patients in the home, is an important
variable that needs to be accounted for, but is beyond the scope of this
study.

Assistance with ADL, IADL and HCA's are not the only areas of
concern to patients, families and researchers. As summarized by Mor,
Greer, and Kastenbaum (1988), the major focus of research on cancer
patients' needs have been in the psychological domain. Symptomatology
related to cancer and/or its treatment is also a topic area readily
found in the literature. Although this research will not address the
psychological and emotional impact of cancer or symptomatology related
to the disease, this research will contribute to the body of cancer
literature and assist caregivers and health care personnel with homecare
of cancer patients by identifying the areas of assistance needed prior
to death so that appropriate services can be arranged within the home to
provide support to family caregivers.

This researcher will provide data to describe specific areas that
cancer caregivers have determined where patients need assistance in
their last four weeks of life. Questions addressing ADL, IADL and HCA's
will be examined to describe areas that most likely will need to be
attended to when arranging home care services for the terminally ill
patient. This researcher will examine specific areas of assistance to
determine if there is a difference between the areas of assistance

needed and hospice service use at time of patients' death and if there

6
are significant differences in those who use hospice and those who do
not.

This information may help guide health care personnel when
arranging for home care services. The overall description of the
caregivers' responses to these ADL, IADL and HCA items may also provide
a knowledge base for anticipatory guidance provided to caregivers when
preparing them for home care during the patient's last four weeks of
life. Caregivers may be able to prepare for the task of homecare,
particularly if they foresee problematic areas that they are not able to
cope with such as the physical demands of assistance with walking or
getting patients in and out of bed.

The information this research provides will also assist agencies
such as hospice to tailor their services to fit the needs of family
caregivers. This may be in the form of teaching basic care and comfort
measures or providing home health aides during times that they are most
needed. This research will provide data to help determine the most
frequent assistance needs of cancer patients during their last four
weeks of life.

With increasing assistance in the areas of ADL, IADL and HCA's,
the need for assistance from another source besides the primary
caregiver would be most helpful in cancer homecare situations. The
shift from in-patient care to care in the home, for a variety of reasons
including cost and patient preference, has placed very ill patients in
the hands of non-medically trained family caregivers (Stetz, 1987).

In summary, this researcher will describe the cancer patient in a
homecare situation by examining their functional limitations and

specific areas of assistance and use or non-use of hospice services at

7

the time of the patients' death. Patient and caregiver age, sex and
relationship will be described along with primary site of cancer and
setting of death. The sample of caregiver/patient dyads will be drawn
from a larger population of caregivers and patients that participated in
a longitudinal study about family homecare for cancer patients.
Overview

In the subsequent chapters of this proposal a conceptual framework
and model on which it is based will be included (Chapter II), a review
of literature related to the concepts identified (Chapter III), research
methodology (Chapter IV), and data analysis presented (Chapter V).
Finally, a summary with conclusions and recommendations based on this

research will be described (Chapter VI).

CHAPTER II
Conceptual Framework

This chapter contains the theoretical framework and conceptual
definitions used to guide this research. Andersen and Newman's model of
health service utilization will be the theoretical framework because it
emphasizes the importance of the characteristics of the health services
delivery system, changes in medical technology and social norms relating
to the definition and treatment of illness, and individual (patient)
determinants of utilization (Andersen & Newman, 1973).
Definitions

Naeds for assistance, as perceived by caregivers, may reflect
patients' functional status and are determined by their physical,
psychological and social abilities. A patients' functional status is
their ability to provide for their own care needs and live
independently. Kane and Kane (1981) use three measures to generate a
global measure of physical health and physical functioning. These
measures include ADL, IADL and measures that tap the construct of
general physical health or absence of illness (p. 26). Needs for
assistance (in this study) are caregivers' perceptions of patients'
needs for help with specific activities such as ADL, IADL and HCA.

Activities of daily living are the most basic necessary self-care
activities performed as part of one's daily routine. There is
substantial consensus about which items indicate ADL activities (Kane &
Kane, p. 39). These include some combination of dressing, bathing,
feeding, toileting and transferring. Most scales also include

continence (Katz et al., 1963).

9

Some of the more complex activities that are associated with
independent life are often referred to as instrumental activities of
daily living and include activities such as cooking, cleaning, shopping,
laundry, money management and arranging transportation. Performance of
many of the IADL functions depend on mental capacity as well as
psychomotor skills. In this study, caregivers' perceptions of ADL and
IADL assist once needs will provide a measure of patient's physical
health during the terminal phase of cancer.

flaalth careaactivities are the more medical-technical treatments
and are activities such as ostomy care, catheter care, receipt of IV
solutions at home, and care for bedsores. Assistance with injections,
medications, and dressings also belong under the category of HCAs.

These HCAs not only provide information on cancer patient's medical—
technical care needs, but some of them may also reflect patient
functioning.

By investigating the types and total amount of assistance that is
provided in these areas, a clearer picture of the terminal cancer
patients' functional status and health care needs during their last four
weeks of life can be established. The assistance needed in all of the
above—mentioned areas can also provide more insight into the plight of
those caring for cancer patients at home during their final days.

The last four aaeks of life will be the period of time of interest
in this research study. Since it is a retrospective study, with data
accumulated after patients' death, this time period will be considered
as the terminal stage for this sample of patients.

The term caregiver can describe various people and occupations,

but in this study a caregiver is defined as a spouse or family member

10
who considers themselves the primary person caring for a cancer patient
in the home setting.

Hospice services and programs are a fairly new addition to the
American health care system. It wasn't until the 1970's that the
hospice movement became actively involved in terminal care. The
National Hospice Organization standards include health care and services
to terminally ill patients and their families seven days a week, 24
hours a day. This care is a medically supervised interdisciplinary team
that works together to provide services for the physical, emotional and
spiritual welfare of both patients and their families (Hor, Greer &
Kastenbaum, p. 12).

Hospice services may originate from various sources. Commonly,
they are provided through hospitals (hospital-based), visiting nurse
services, or a separate free—standing organization that only provides
hospice services to the terminally ill. Inpatient and home care
services may be provided by hospice which are supportive and palliative
in nature and are directed at allaying the emotional and physical
discomfort associated with terminal illness. Bereavement and
educational programs are also sometimes offered. Volunteers are
important members of the hospice team along with other interdisciplinary
members.

These specific services may not be included in every program
advertising "hospice services". It is not possible to determine the
types of hospice services that were available to patients who
participated in this study. It is not within the scope of this study to

determine the organizational base of the hospice care that was utilized.

11
It can only be determined if hospice services were utilized and the
types of services used at the time of death.

Patients and their families may be introduced to the possibility
of hospice care via sources such as the news media or health providers.
Some may not have been aware of the services or thought that it was
something that was unavailable to them. According to local hospice
service providers, anyone can make a referral to Hospice, including
family members. Patients are accepted regardless of their ability to
pay. To be eligible a patient and family consent to participate, are
residents of a defined area, have a responsible person to assist in the
patient's home management and have a life expectancy of six months or
less as confirmed by their personal physician. If patients need
assistance beyond that six month period services are still provided and
covered by most health insurances and Medicare (Hospice of Lansing and
Greater Lansing Visiting Nurse Services, 1991).

In this study, the individual determinants of service use and
actual service utilization (hospice) are the focus of attention and
shall be examined using the Andersen-Newman service utilization model.
Overview of the theory

The main components of Andersen and Newman model are societal
determinants, the health service system, individual determinants and
health services utilization. Figure 1 shows the relationships among
these components. Societal determinants of utilization are shown to
affect the individual determinants both directly and through the health
services system. The various types of individual determinants then
influence health services use by the individual (Andersen and Newman, p.

97).

12

 

 

 

 

 

Societal Determinants Haalth‘Seryices Syatem
Technology % Resources
Norms Organizations

 

 

 

 

\ /

Individual Determinants

 

Predisposing
Enabling

Illness Level

 

 

 

 

Health Services Utilization

Type

Purpose

 

 

Unit of Analysis

 

Figure I: Andersen/Newman Health Service Utilization Framework

13

The societal determinants of service utilization are considered to
be technology and norms. Technology refers to principles and techniques
that enhance or assist with achieving a desired result, i.e., laboratory
testing to assist physicians with diagnosis of disease. Technology has
also changed the patterns of health care. Developments in areas such as
surgery, radiology and nuclear medicine have significantly altered
patterns of care for hospitalized patients in terms of case mix and
average length of stay (Andersen & Newman, 1973). The increasing
numbers of antibiotics and immunizations available can also be
considered an example of technology's impact on service utilization.

Norms are reflected through formal legislation as well as growing
consensus of beliefs and homogeneity of values which pervade the
society, thus shaping the health service system and utilization patterns
(Andersen & Newman, p. 103). An example of this would be the shift of
treatment from an inpatient to outpatient basis or changes in beliefs
about the necessity of birth or death taking place in a hospital. The
use of hospice services in the home for the terminally ill may be a
norm.

Another example cited by Andersen and Newman is the financing of
various kinds of health services through programs such as Medicaid and
Medicare. Societal values influenced the development of these as a
result of wanting to reduce financial hardship, decrease out—of—pocket
expenditure, and increase accessibility of medical care to those
particular populations. According to local hospice organizations,
hospice services are reimbursed by Medicare, Medicaid, Blue Cross/Blue
Shield, private insurance and health maintenance organizations.

Contributions to the hospice organizations from various charities assist

14
those without insurance coverage or when the cost exceeds coverage
benefits.

The societal determinants of technology and norms influence both
the health services system and the individual determinants in the
Andersen & Newman model. The health services system consists of a
resource and organization component. The resource component includes
total volume of resources relative to the population served and the way
in which the resources are geographically distributed within a country.
Those patients that may be eligible for hospice services may not be in a
geographic area included in a hospice service district. Hospice
services may not be accessible to some families.

The organization components are access and structure; access
referring to the means in which the patient gains entry into the medical
care system and continues the treatment process while structure refers
to characteristics of the system that determines what happens to the
patient following entry into the system. Access, as defined here, is
actual referral to the services needed which, in this case, would be
hospice services. Referrals to hospice services may be through
physicians, nurses, social workers or others, including family members.
Whether or not all eligible terminally ill patients are offered hospice
services cannot be determined as part of this research.

Both societal determinants and the health services system affect
the individual determinants. Various individual determinants then
influence health services use by the individual. Bass and Noelker
(1987) expanded this area of the model to include caregiver and patient

characteristics under individual determinants.

15

In the expanded model, individual determinants of the Caregiver
and patient include predisposing, enabling and need factors.
Predisposing characteristics include sociodemographic characteristics
and health-related attitudes that may predict the use of formal
services, such as hospice. To some families, caring for a dying family
member within the home and using outside assistance such as hospice is a
viable alternative to inpatient care in a hospital or long term care
setting.

Enabling characteristics of the patient and caregiver refer to
resources which promote or inhibit service use. An example given by
Bass and Noelker is the proximity of community health services and
household income of married patient/caregiver dyads. As mentioned
previously, hospice services may not be available in certain geographic
locations. The financial status and insurance coverage of the cancer
patient and caregiver are enabling characteristics that influence
hospice or formal service use.

Another enabling factor is caregiver's education level which is
often used as a proxy for knowledge of services (Bass and Noelker, p.
186). It is assumed that increased knowledge of available resources
occurs with higher levels of education.

Need factors pertain to illness or impairment levels of the
patient. According to Andersen and Newman, illness level represents the
most immediate cause of health service use (Andersen and Newman, p.
109). In this study the amount of assistance provided and terminal
level of illness reflect patient dependency levels as well as the

caregivers level of involvement (Given & Given, 1991).

16

The last major component of the Andersen and Newman model is
health service utilization. The health service can be investigated
according to type, purpdse or unit of analysis. Type may include
nursing homes, physician services or home care such as that provided by
hospice services. Purpose can be primary, secondary, tertiary or
custodial care. Hospice services would be considered as custodial care,
for their purpose is to allow patients to live their final days as
comfortably as possible in their own homes. Hospice focuses on making
clients as pain and symptom free as possible while maintaining optimal
function and quality of life. Care is directed at comfort and not cure
(Greater Lansing Visiting Nurse Hospice Service, 1991).

The unit of analysis may be contact (use or non-use), volume (such
as the number of times used), or episodic care. According to Andersen
and Newman, by looking at the episode concept one would be able to
delineate a particular illness experience and all of the medical care
associated with the experience. For this research, the episode of
interest is the terminal phase of cancer, particularly the last four
weeks of life. Contact with the service will be use or non-use of
hospice services that were provided, if utilized.

This research is limited in the amount of attention that it can
provide to all the variables outlined by Andersen and Newman's model of
service utilization. The variables of major interest to be considered
are individual determinants of the patients, particularly their need
factors, and the health services utilized. For this research,
individual patient determinants are predominantly the patient's illness
level which is reflected in their functional limitations in the areas of

AOL, IADL and HCA assistance needs. The specific predisposing, enabling

l7
and illness level characteristics as described in this research are
outlined in Figure 2.

The caregiver's relationship to the patient, income and
educational level are considered to be determinants of service
utilization and influential on the patient's use of services along with
the amount of caregiving stress experienced by the caregiver. The
nature or amount of assistance provided cancer patients by their
caregivers may have various negative effects on caregivers and thus
influence their use of community services to obtain some relief from the
stress of caregiving (Bass and Noelker, p. 187; Hess and Soldo, 1985).

Eligibility for certain services also determines their use. For
hospice use, it is a physician statement of the finality of the cancer.
To be eligible for hospice services under Medicare Part A, the patient
must be certified by the attending physician and the hospice physician
as being terminally ill with a life expectancy not exceeding six months,
if the disease runs its usual course (Greater Lansing Visiting Nurse
Hospice Service, 1991).

The total amount of the various types of ADL, IADL and HCA's along
with the number of hours of direct care per day will provide some
insight into the stress caregivers may be experiencing in a terminal
cancer situation thus influencing their use of health services such as
hospice services.

The service being investigated in this study is hospice service
use. It will be defined as use or non—use, and if utilized will be
described further as to specific types of hospice services utilized such
as nursing, hospice social worker, health aide services or provision of

equipment necessary for care. As described previously the Andersen and

18

Predisposing Enabling Illness Level
Age Caregiver Functional limitations
Sex present HCA assistance needs
Relationship to caregiver Hours of care

Primary

Figure 2: Individual Determinants of Health Service Utilization

 

19
Newman model views utilization by type (hospice), purpose and unit of
analysis. The purpose of hospice use at this point in the cancer
trajectory is custodial in nature. Again, the unit of analysis will be
use or non-use.

The entire conceptualization of this research problem can be
classified as episodic service utilization and will better describe this
illness experience so that implications for practice and health care
interventions may result from these findings. Figure 3 depicts the
relationship of the concepts and components of this research study as
they relate to the Andersen and Newman model. The individual
determinants of service use will be described for the entire sample of
cancer patients then described for the group that used hospice services
and for the group that did not use services. This figure depicts
patients determinants such as age, sex, primary cancer site and hours of
care which will be described separately for hospice users and non-users.
ADL, IADL and HCA assistance during the last four weeks of life will
also be described for the total sample as well as the two separate
groups when divided into hospice users and non-users. For the hospice
users, the services provided by hospice will be described for these
subjects. Comparisons will then be made between the users and non-users
of hospice with regard to their individual determinants, specifically
ADL, IADL and HCA assist during the last four weeks of life.

This researcher hypothesizes that there are differences in
individual determinants when comparing hospice users and non-users and
by splitting the sample accordingly this can be determined and described

more accurately.

20

DETERMINANTS

 

Age, sex, primary site, hours of
care, functional limitations in ADL,

IADL, and assistance with HCA during

 

 

the last four weeks of life

 

 

 

Hospice service use Np Hospica use
at time of death at time of death

 

 

 

Types of hospice

services used

 

 

 

Figure 3: Individual Determinants and Service Use

21

Limitations

All factors that would predict service utilization, as outlined by
Andersen and Newman, cannot be considered as part of this research
study. This research will only describe apma of the individual
determinants and gap service (hospice). This research will not analyze
the causal relationship between individual determinants and hospice use,
but will describe these variables and determine differences of the

individual determinants of hospice users and non-users.

CHAPTER III
Review of the Literature

This chapter is a review of the literature relevant to this
research study and will include the concepts of AOL, IADL and HCA
assistance and hospice utilization. There are numerous studies that
have addressed caregivers, functional assessments and needs of patients
and service utilization, but a limited number that specifically relate
to cancer patients, hospice utilization and patient needs for assistance
in AOL, IADL and HCA's during the terminal phase of cancer.

ADL, IADL, and HCA Assistappa

ADL and IADL activities are often measured as part of what has
been termed "functional assessments" in the long term care arena.
Although their study was focused on chronically ill and disabled
persons, Fortinsky, et al, (1981) explored the use of a functional
assessment as means of understanding individual needs for long term care
in the home setting. They explored personal care needs (ADL),
psychological, socioeconomic and demographic characteristics of 89
chronically ill and disabled persons who were receiving home health care
from a visiting nurse association (VNA). They posited that personal
care needs for home-based services is not defined diagnostically but
rather in functional terms (p.490).

Their sample subjects were receiving basic care services 3-4 days
per week plus surveillance visits by a registered nurse every two weeks.
They utilized the Barthel Index to measure the degrees to which a person
can function independently in performing AOL. The index included

mobility, transferring, toileting, continence, grooming, bathing,

22

23
dressing and feeding/drinking (total of 15 activities) and scored them
on four levels from independence to total dependence.

They compared these scores to a list of 72 VNA tasks and found
that on an individual basis there was a very strong relationship
between Barthel score and the number of tasks performed independently
and that the Barthel score is moderately or strongly associated with the
level of support required for most personal care tasks. They also found
that the Barthel score correlated with required support for light
housekeeping and cooking or meal service.

Morris, Sherwood, Wright and Gutkin's (1988) analysis of the
National Hospice Study (NHS) data focused on quality of life of cancer
patients in the last few weeks and had some functional status measures
in the Hebrew Rehabilitation Center for Aged Quality of Life Index.

This index included a daily living category which addressed ability to
manage personal care, overall health (unconscious or feeling very ill to
feeling great) and mobility, along with support and outlook. Some, but
not all, activities of daily living were addressed as part of a larger
concept of patient functional status. Their means of this index
suggested that an overall decrease in quality of life occurred
comparably across samples and was most accentuated just prior to death
(p. 124).

Mar, Guadagnoli, and Wool (1988) concluded from NHS data that
among patients undergoing active chemotherapy those receiving adjuvant
or curative treatment were less likely to experience the functional
problems for which they require assistance than those receiving
palliative treatment. They found only a small minority experiencing

functional deficits that inhibited their performance of basic physical

24
activities. Most patients requiring assistance needed help in
performing the instrumental activities of daily living (p.114).

Houts et al (1988) concluded as a result of their study about
unmet needs of cancer patients during their last month of life that
activities of daily living were the most frequent unmet needs.

Emotional and physical unmet needs were the next most common. They
defined “unmet need" as a "yes” response to specific questions about
areas where additional help was needed during the last month of life.
They compared two groups of subjects. One group (N=182) was newly
diagnosed with cancer and analysis was based on patient response, while
the other group (N=433) were family members of patients who had died of
cancer and their responses to questions dealing with needs in the last
month of life.

The need areas surveyed were; physical, activities of daily
living, nutrition, reactions to treatment, emotional life purpose,
social, family, financial, insurance, getting health care, medical staff
and home health care and transportation. Their area of physical need
included some symptoms along with bladder or bowel management.
Activities of daily living included feeding or dressing self, walking,
getting up or down stairs, preparing meals, doing home maintenance, etc.
Transportation was a separate category and included getting to medical
treatments, shopping or work.

When comparing these two samples, Houts and associates showed that
the reports by persons with cancer and caregivers' reports of problems
or needs were not significantly different. Their conclusions, based on
their studies, were that during the terminal period of care, activities

of daily living were the most frequent unmet need (42%) which was twice

25
the frequency of any other need area. Emotional and physical (21%) were
the next most common needs. Physical unmet needs were reported more
frequently when the person with cancer was non-white, younger, had a
diagnosis of breast cancer (increased occurrence of metastasis to bone)
and spent more days at home in the last month of life (p.631).

When comparing the terminal group responses to the newly diagnosed
group they found "marked differences" in needs related to AOL which was
almost 3 times as frequent in the terminal period as in the period just
after diagnosis. Their data also supported significantly higher rates
of unmet needs for health care, problems with medical staff and
transportation. Unmet needs for homemaking services were more frequent
than home health care.

Houts and associates' 14 areas of needs were groupings of
activities or needs and were not broken down further into individual
components, i.e., ADL were grouped together, so it was not known whether
patients had more unmet needs with feeding vs. dressing. Bladder and
bowel control were part of physical needs, while transportation an area
of need on its own. Interestingly, home maintenance was included in the
ADL area of needs. Specific health care activities were not addressed
in their home health care category. Only learning to care, obtaining
supplies and getting medical help from community agencies/groups were
included in this category.

Houts and associates did not look at service use, particularly
hospice service use, as part of their study but it did attempt to help
determine unmet needs as perceived by caregivers of cancer patients

during their last month of life.

 

1'.

26

Goodwin, Hunt and Samet (1991), surveyed 799 men and women over
age 65 years who were pagly diagnosed with cancer. Their study
investigated the functional status and social support networks of these
elderly individuals with emphasis on predictors of social support in
this population. Using AOL and IADL items as measures of functional
status, they found few individuals that were totally dependent, but a
large percentage relied on others for assistance with AOL and
transportation. Their study did not specifically relate to cancer
patients during the terminal phase of cancer or investigate services
used.

Satariano, Ragheb, Buck, Swanson, and Branch (1989), surveyed 571
women at 3 and 12 months after diagnosis of cancer to compare
instrumental functioning, or IADL difficulties, with women of similar
ages without the disease. They found that those in greatest difficulty
were cases aged 65 to 74 and their need for assistance persisted up to
one year after diagnosis. Satariano's study had addressed IADL but did
not include the AOL or HCA of patients. The stage of cancer was not
specified. Goodwin's and Satariano's studies described function to some
extent but did not address the cancer patient during the terminal phase
of cancer.

Although Linn and Linn (1981) were investigating responses to
counseling in late stage cancer patients, they found significant
correlations between disability and death but most patients were able to
perform activities of daily living up until the time of their death.
They did not address IADL and HCA items as part of patient disability.

Grobe, Ahmann and Ilstrup (1981) looked at a group of terminally

cancer patients and the skills that were needed by their family members

27
to maintain care in the home. They asked family members of advanced
cancer patients and family members of those deceased about skills they
needed to learn. The skills they addressed dealt with AOL and HCA's.
Over two-thirds of their respondents cited the need to learn at least
one of the following skills: 1) ambulation, 2) bowel management, 3)
comfort care, 4) dietary control, 5) pain management, and 6) wound and
skin care (p. 374). This indirectly gives examiners of this study an
idea of functional abilities in the areas of AOL and HCA's but does not
address or give an indication as to patient's abilities in IADL. Their
study did not link ADL, IADL and HCA with any particular service use.

Spouse caregivers were interviewed in Stetz's (1987) descriptive
study of terminally ill adult cancer patients. The caregiving demands
most frequently reported were managing the physical care, treatment
regimen, and imposed changes. The next two most frequently reported
demands were managing the household and finances and standing by (p.
260). Very few specific ADL, IADL or HCA were addressed. Questions
were more global in nature.

Garland, Bass and Otto (1984) sought to provide empirical measures
of at least some of the needs that characterized terminally ill cancer
patients and their family members. Their final analysis was based on
121 cases enrolled in a hospice program. Patient need included
assistance with household tasks, but that was rank-ordered as last on
the list. Caregivers expressed need for assistance with patient care
(#2 of 5). They touched upon self-care and instrumental and health care
activities, but did not ask about each specific area of AOL, IADl and

HCA's.

 

 

 

28

In a sample of cancer patients randomly selected from a cancer
clinic, Hinds (1985) found that families needed assistance with the
physical care of their patients and a small percentage of those
possessed knowledge regarding services available and a small percentage
actually used services. Her sample did not include criteria for time
since diagnosis, stage, etc., so it was unknown how many patients may
have been in the terminal stage.

Grobe, Ahmann and Ilstrup (1982) interviewed 28 family members and
30 cancer patients to find out what services they thought they needed
during the patient's pre-terminal period. Aside from a lack of
agreement about some needs, family groups indicated a greater need for
medical monitoring in the home which included visits by physicians
and/or nurses. The need for home care equipment, transportation, and
personal care assistance was reported by approximately half the members
of each of the three groups of respondents. Family members of living
patients also expressed the need for companionship for the patient,
intermittent care for family relief, financial assistance and legal
services (p. 28). They found that, in general, families had more needs
for service than patients, warranting increased attention during the
pre—terminal stage of cancer. Grobe and associates attempted to
determine needs of patients and caregivers during the terminal phase of
cancer, but did not investigate specific services utilized to meet those
needs.

Kirschling (1986) has categorized this literature based on care of
the terminally ill into three areas: 1) the needs of family members, 2)
that which family members perceive as supportive, and 3) the

psychological well-being of family members (p. 123).

29

Family member's perceptions of needs and how they perceive their
needs are met has been investigated by Grobe et al. (1981, 1982),
Garland, Bass and Otto (1984), Wright and Dyck (1984), plus others, but
the "needs” addressed varied. Some of the studies touched upon physical
care of the patient (Wright & Dyck 1984; Grobe et al., 1982) in a global
sense, and a few others mentioned assistance with instrumental
activities, specifically, household tasks (Garland, Bass a Otto, 1984)
or other activities such as medical monitoring, chores, transportation
(Grobe et al., 1982).

No research was found that addressed caregiver's perceptions of
assistance needed in the specific areas of AOL, IADL and HCA's as
outlined in Chapter I. They referred to one or two from each category,
but this was sometimes a global measure of all self-care activities or
instrumental activities and was not broken down into individual
activities.

Hosoice Use

To function effectively, almost all caregiving families eventually
have to seek assistance to supplement their efforts. This assistance
may be more informal in nature such as help from other relatives,
friends or neighbors or it may be more formalized and be provided by
health care personnel or agencies. Cancer patients' needs for various
forms of assistance and support are exacerbated by disease progression
(Mor, Guadagnoli, & Wool, 1987; Houts et al., 1986).

The greatest body of literature relating to cancer patients,
assistance and hospice service use has been written by Vincent Mar and

associates and based on data obtained through their research in the

30
National Hospice Study (NHS) funded by the Department of Health and
Human Services and Health Care Financing Administration.

The National Hospice Study was and attempt to evaluate the success
of the hospice mission in the United States and designed to assess
whether hospice care functions according to its own philosophy and
attains its stated goals, whether it is superior to conventional care
and, if so, how (Mor, Greer & Kastenbaum, 1988). Aside from hospice
evaluations, data had also been gathered that addressed patient
functioning and services provided by hospice organizations that were
hospital based, home health agency based or freestanding hospice
organizations. Data was obtained on 1,754 hospice and non-hospice
patients selected by predetermined criteria who were identified in 40
hospices and 14 conventional oncological-care settings from October 1980
through March 1983 (Mar, 1988).

Wool, Guadagnoli, Thomas and Mor (1989) surveyed 413 cancer
patients undergoing chemotherapy to determine their concrete needs.

They defined concrete services as assistance needed to manage symptoms,
side effects and everyday needs. Their review of the literature found a
possible association between disease progression, functional status,
social support and reported needs and service utilization among cancer
patients. Mor, Guadagnoli, and Wool (1988) also substantiated that as
patients deteriorate from cancer their concrete needs increase.

Wool's questions concerned patients' need for assistance with
personal activities, such as dressing and self-care; instrumental
activities, such as shopping and transportation; and administrative
issues such as information and help completing insurance and other forms

(p. 188). Wool's sample of patients had mixed diagnoses and varying

31
time since diagnosis. They were not all in the terminal phase of cancer
where function decreases and service need increases. Despite this
sampling variation, few patients reported needing assistance with
personal activities and 88 percent of respondents reported needing help
with at least one instrumental activity. They found that unmet need
generally was greater for the patients with more advanced disease who
were receiving palliative treatment (p. 189).

Although the NHS data illustrated a decline in functioning and
increasing hospice service use, the samples were not contrasted with
those patients that did not use hospice service. The specific areas of
patients' needs in AOL, IADL and HCA's were not detailed for these last
weeks of life although an overall picture of their quality of life was
presented. The patterns of home—care hospice services showed a steady
increase in skilled nursing and home health visits per week with the
most visits occurring during the week preceding death (Kidder, 1988).
According to Carney and Burns (1991) functional status and nursing needs
appear to influence the stage of a patient's illness at which hospice
enrollment occurs and about one-third of patients needed skilled nursing
care at time of admission to hospice.

Prigerson (1991) examined several factors she believed would
facilitate or inhibit the use of home-based hospice services, but her
study focused mainly on the attitudes regarding treatment of the
terminal patient and the influence of physician and primary caregiver on
receipt of hospice services. In the Andersen-Newman model these would
have been categorized as societal determinants or within the health
services system portion of the model. These variables warrant

consideration, and her study did include patient functional limitations

32
or assistance needs as factors influencing hospice service use, but she
focused more on the results of hospice intervention for patients
enrolled in a hospice program.

Spector and Mor (1984) looked at service utilization and charges
generated by cancer patients during their last six months of life and
found that the majority of services were clustered within the last three
months (p. 330). They found that medical care costs were concentrated
in the last month of life and that there was a shift from hospital—based
to home-based care. They found home care, particularly through hospice
services, to be a viable and less costly option as compared to
hospitalization (p. 335).

Mor and Masterson—Allen (1990) analyzed data from the National
Hospice Study to compare medical and service use of patients served in
hospice and non—hospice settings during their last two weeks of life.
They compared home—care hospice, hospital—based hospice and conventional
care groups to determine differences in use of supportive and palliative
services such as oxygen and respiratory therapy, radiation therapy,
analgesic prescription and utilization patterns and receipt of social
and alternate service interventions. Social service receipt was more
likely to have been reported by hospice patients throughout the study
period and during the last weeks of life than was the case with
conventional—care patients (p. 90). Other specific services were not
itemized.

Meyers, Master, Kirk, Jorgenson, and Mucatel (1983) concluded from
analysis of their data that of 85 patients that received home care for
terminal illness, only about 10 percent use a relatively high volume in

both in—patient and home care services and that there are two dimensions

 

33
to services use: a medical dimension which varies in response to
patients' medical characteristics and a social dimension which varies
according to their social support (p. 71). Their data had revealed that
nurse practitioners and home health aides provided the greatest volume
of care to terminally ill patients but that physicians, physical
therapists, and social workers also had critical roles. It also
revealed that those patients who had 24-hour caregivers had
significantly lower levels of utilization of home health care aides than
those with less than 24-hour coverage. A

As Mor (1987, 1988) and Houts (1986) had also concluded, although
trajectories of terminal illness vary, those with the steepest
trajectory-~most notably, cancer patients—-appear to require the most
intensive care. Meyers' study had looked at data gathered from a sample
that had died from deteriorating chronic disease which had happened to
include cancer patients. Their sample was not exclusively cancer
patients.

Hays (1986) looked at predictors of hospice utilization in a
sample of 100 patients in the Connecticut Hospice Home Health Care
Program. She had compared symptomatology, family coping and resource
utilization by retrospective chart review of the final ten days of life.
Approximately half of their families were able to manage terminal care
at home until death. Analysis of symptoms and coping prior to
institutionalization provided a picture of patients that required ”the
most manpower-intensive, 24 hour hospice service" (p. 324). These
patients tended to report uncontrolled pain, problems with voiding or
bowel function, decrease in nutritional intake, nausea/vomiting, and

confusion and/or decreased mental alertness. This researcher suspects

 

 

34
that a look at AOL, IADL and HCA assistance may also have reflected
this.

McCusker (1985) also sought to identify factors associated with
the use of home care, including home hospice, by patients with terminal
cancer. She interviewed surviving relatives and physicians of cancer
patients and attempted to compare functional status to service use also.
From data collected via physician interviews and chart review, she
categorized patient functioning according to the Eastern Cooperative
Oncology Group Performance Scale. Of the 122 subjects 54 had been users
and 68 non-users of home care services. Home care users were
significantly more likely than non-users to be under 65 years of age,
married, have a spouse as the primary caregiver, have a longer terminal
care period, and be home based during the terminal care period (p. 45).

Over the disease course, as patients' independent functioning
decreases, their need for assistance increases. Their need for concrete
services is predictable and may also result from the bureaucratic
complications, financial burdens and emotional stresses that often
accompany major illnesses (Mor et al., 1988). They felt that these
needs (functional deficits) may be met relatively simply by providing
patients with home health or transportation services and educating
patients and families as to the availability of services (p. 116).

Each of the above studies has helped to describe various aspects
of cancer situations for both patients and families, but they have not
yielded concise information about the assistance needed in all areas of
AOL, IADL and HCA's during cancer patient's last four weeks of life as

they might relate to hospice service use.

35

This researcher's study is based on a minute portion of the vast
amount of information obtained thus far as part of the Given and Given
(1989) study. Previous research as been found deficient when it is
necessary to descriptively portray a cancer home care situation. This
study will help to clarify the specific assistance caregivers perceive
as needed by cancer patients in the last four weeks of life which has
not been done in any studies found this far. It will also compare
hospice use with these ADL, IADL and HCA's which has also not been done

with respect to the last four weeks of life of the cancer patient.

 

 

CHAPTER IV
Methods

This analysis will be based on data obtained as part of the
longitudinal studies ”Family Homecare for Cancer--A Community Based
Model" funded by the National Center for Nursing Research (#1 R01
NR01915) and "Family Homecare for Cancer Patients' funded by the
American Cancer Society (#PBR-32). The first study, “Family Homecare
for Cancer--A Community Based Model" was started in 1988 and continued
funding was received by the American Cancer Society to complete
interviews with the 367 cancer patient and caregiver dyads recruited as
part of the original study.

The primary purpose of these studies was to examine the family
caregiving experience through data collected over three months for up to
five or seven data collection points. The specific dimensions of the
caregiving experience that the principal investigators (Dr. Barbara
Given and Dr. Charles W. Given) were interested in were: care needs of
the patient, the financial impact of caring, disruption of daily
schedule, restrictions in social activities, physical responses of the
caregiver, positive and negative responses of the caregiver, family
relationship changes, interactions with the patient, extent of caregiver
involvement and caregiving activities, service utilization and caregiver
self-care practices. Their ultimate goal was to describe the needs for,
receipt of, and the outcomes of care provided to patients with solid
tumors by families from formal health care systems (physicians and home
care agencies) located in community-based settings.

Data was obtained through telephone interviews with the primary

caregivers and self-administered questionnaires completed by both the

36

37
caregiver and patient at data collection points. Interviews were
completed with caregivers by trained data collectors. These data
collectors had participated in two eight-hour interviewer training
sessions where their interview skills were monitored, critiqued and
their accuracy and interrater reliability checked at regular intervals
across the intake and screening phases and occasionally at subsequent
waves. Taped interviews with caregiver consent were also obtained for
interviewer evaluation.

As part of the longitudinal study, a bereaved interview was done
over the telephone with caregivers three months after the patient's date
of death. Some bereaved interviews were completed at a six month
interval if unable to be reached at three months. Bereaved interviews,
on the average, were conducted 3.6 months from the date of death with a
range of 0.95 to 8.7 months for completion after the date of death. The
data that is being utilized as part of this research study was gathered
during these bereaved interviews.

A total of 367 patient/caregiver dyads were recruited for the
original study through agencies in Michigan and Ohio. Criteria for
eligibility included, caregivers must be caring for a family members
with solid tumor or lymphoma, who had at least one deficit in activities
of daily living or symptoms associated with cancer disease or treatment,
required some family assistance, and were currently under active
treatment for new disease or recurrence.

This original group was a self-selected sample. After screening
and determining eligibility, consent forms were mailed to both patient
and caregivers (Appendix A). The voluntary and confidential nature of

the study was presented to both caregivers and patients. Subjects'

 

 

38
identities were kept confidential and will not be linked to specific
responses or findings.
mm

The sample of bereaved cases utilized in this study (N=123)
includes patients whose caregivers had completed at least the first
interview (intake point) before the patient died and also completed the
bereaved telephone interview after death. Three subjects had refused
this interview and two were unable to be contacted, leaving 118
interviews for data analysis.

Operational Definitions

Assistance levels of patients were operationalized in terms of the
caregivers' perceptions of the need for assistance in AOL, IADL and HCA.
The responses to these questions allowed for "yes", "no", or "not
applicable" responses. These items were not asked if the patient had
been hospitalized 30 or more days before death (Involvement instrument-
Appendix B).

The AOL items include basic self-care activities such as
dressing/undressing, combing hair/shaving, showering/bathing, toileting,
walking, getting around the house, getting in and out of bed, and
assisting with incontinence of urine and stool. Lifting or turning will
also be included (Figure 4).

The IADL items addressed were: shopping, light housework,
laundry, cooking, handling money and transportation. As mentioned
previously, Kane and Kane (1981) include AOL and IADL as two out of
three categories of measures to derive a global measure of physical
health. These activities can be assessed through caregiver ratings of

usual performance. Many IADL scales may overemphasize tasks customarily

 

39

 

Activitias of Daily Living
Dressing/Undressing
Combing Hair/Shaving

Using Toilet, Bedpan or Commode
Taking a Shower or Bath
Walking
Getting Around the House
Getting In or Out of Bed
Mouth Care
Being Lifted or Turned
Incontinence of Urine
Incontinence of Stool

Instrumental Activitias of Daily Living
Shopping
Light Housework
Laundry
Cooking
Transportation
Money Management

Haalth Care Activities

Medications

Ostomy Care
Injections

Catheter Care
Bedsores

IV Solutions

Dressings for Wounds or Sores

Figure 4: ADL, IADL, and HCA Items

 

40
performed by women (p. 55-57). It is a limitation of this IADL scale
that four of six IADL items may be viewed as being customarily performed
by women and will not accurately depict a male patients' functioning or
potential for functioning in these areas. Shopping, cooking, laundry
and housework may customarily have been done as part of caregivers role
(if female) and due to the wording of these items may be reflected by
numbers of "not applicable" responses.

HCALa included: taking medication, ostomy care, injections,
catheter care, lifting/turning, care for bedsores, IV solutions and
dressings for wounds or drains.

Content validity has been established for the AOL and IADL items
in previous research but HCA item grouping is based on face validity.
Correlations of items in each category will be examined by computing
coefficient alphas to confirm the reliability of these groupings.
Content validity for AOL items has been established in the past (Kane
and Kane, 1981; Katz, 1963) and there is general agreement regarding the
types of activities that are included in this researcher's ADL category.
Mouth care is conceptually ambiguous in that it may be both an indicator
of AOL or HCA (for the cancer patient). Thus, it will be examined and
put into the best fitting grouping depending on the correlations of this
item to others in each group (ADL vs. HCA). Caregivers may have
responded to the need for mouth care as meaning assistance with brushing
teeth or care of dentures instead of specialized treatments for the
patients' mouths.

The difficulties that arise with the IADL items has been discussed
previously. The items addressed as part of this research have been used

by Lawton in his PGC Instrumental Activities of Daily Living and

41
Instrumental Role Maintenance Scale (Kane and Kane, 1981). It has been
noted by Lawton that these scales ”do not tap full content of IADL and
are more suitable for women" (Kane and Kane, p. 60).

Hpspice service use data was gathered by asking the question,
"Were hospice services used at the time of (patient's) death?" "Yes” or
"no" responses were recorded and, if "yes", services provided by hospice
were to be described. Types of hospice services used were coded as
nurse aide/nursing, nurse and social worker services, volunteer/lay
person or "other".

Scum

If the patient was not hospitalized for 30-plus days before death,
ADL, IADL and HCA positive responses will be totalled for each category.
ADL ranges may be 0-10, IADL ranges may be 0-6 and HCA's 0-8. The
totals of positive responses in all three categories will yield an
assistance level that can range anywhere from 0-24. Separate ADL, IADL
and HCA totals will also be tabulated.

Some of the assistance items included "not applicable" as a
possible response to the question. If responses were recorded as "not
applicable" for the items pertaining to mobility, the responses will be
recoded as positive responses for needs for assistance. Patients who
did not "walk", "get out of bed" or "get around the house" would have
assistance needs related to these limitations. Caregivers would most
likely have responded "yes" to these items had they not been given a
"not applicable" response.

The IADL items also had "not applicable" responses that related
more to family or household roles than functional limitations. Since it

would be impossible to guess if patients would have needed assistance

 

 

42

with these IADL activities, the ”not applicable" responses shall be
recoded as "no" responses for the purpose of scale scoring and
reliability analysis only. Only definite responses to needs for
assistance ("yes" responses) will be tabulated for frequencies and
percentages of specific activities. The IADL items referred to were
help with shopping, light housework, laundry, cooking, and arranging
transportation. The "not applicable" responses were that the patient
"didn't do shopping, housework, laundry, or cooking" or that the patient
"did not leave home" in the case of arranging transportation. It was
not known whether patients did not leave home due to functional
limitations or personal preference.

The "not applicable" responses for the HCA items will be recorded
as "no" responses. For instance, if the patient did not have a
catheter, he/she would not need assistance and recoding as a "no"
response will not affect the positive response scores for any of the HCA
items that included a "not applicable" response.
Validity and Reliability

A discussion of face validity has been presented previously for
the AOL and IADL items. The HCA items are grouped as such because of
their medical/technical nature. The HCA items are some of the nursing
services most often provided by home health care agencies (Fortinsky et
al., 1981). Reliability and correlations of the ADL, IADL and HCA
groupings will be analyzed to determine and support item groupings.
Analysis

The descriptive analysis will include: 1) frequencies for each
ADL, IADL and HCA; 2) means based on total "yes" responses for

caregivers in response to patients' needs for assistance with activities

 

 

43
in each category (ADL, IADL and HCA); 3) correlations of items included
in these groupings of ADL, IADL and HCA; 4) frequency of hospice use at
time of death; and 5) types and frequencies of the specific hospice
services utilized for the hospice users.
These are the methods that will be used to answer the research

questions.

 

Question #1: What are cancer patients' functional limitations in
AOL and IADL and assistance needs during their last four weeks of life?

Descriptive statistics will be employed to determine:

- frequencies and means for each ADL, IADL and HCA.

- means for groupings of ADL, IADL and HCA.

Question #2: Are hospice services utilized at the time of death
and, if so, what types?

Descriptive statistics will be employed to determine:

— frequency of hospice use at time of death for the sample.

— the specific types of hospice services utilized and frequencies
for these types of services for those who utilized hospice services.

Question #3: Is there a difference between hospice users and non—

users with respect to their ADL, IADL and HCA assistance needs at the

 

time of their death?

To answer the third research question, the sample of bereaved
cases will be divided into hospice users and non—users. Comparisons
will be made between hospice users and non—users in each of the separate
ADL, IADL and HCA categories using mean scores to determine if there
were differences in these assistance levels of the two groups (using

mean scores and ANOVA F-test comparisons).

44

The SPSS-X computer program will be used for data analysis.

Tables will include patient characteristics such as age, sex, and
primary cancer site with descriptive statistics such as frequencies,
percents, means and ranges, if relevant. Caregiver's age, sex,
relationship to patient and hours of direct care will also be detailed
in a similar table. Frequencies and percents of hospice use and non-use
at time of death, as well as site of death for patients will be
included. The sample will then be divided into the users and non-users
of hospice to determine the two groups' separate means for AOL, IADL and
HCA. These means will then be compared using ANOVA F-test to determine
if their variation in means was due to chance or assistance levels.

If this researcher's hypotheses are true, that there is a
difference between hospice users and non-users with respect to patients'
ADL, IADL and HCA assistance needs, then the descriptive statistics
shall provide a more detailed view of the terminal cancer stage and
specific hospice services utilized to help provide care at home for

cancer patients.

CHAPTER V
Analysis
Sample Characteristics

There were 124 bereaved interviews used for this data analysis.
On average, interviews were completed 3.6 months after death, with a
range of .95 to 8.7 months from date of death (Table 1). Most of the
patients had died at home (47.9%, N=56) or in the hospital (45.3%,
N=53). The remaining subjects had died either in a nursing home, in
hospice care or other settings (Table l).

The average number of hours of direct care as perceived by
caregivers (N=116) in this sample was 10.9 hours per day (Table 1).
Caregivers were asked how many hours per day they provided direct care
for their relative. They were to include time spent supervising their
patient and actual caring activities while excluding the time they spent
keeping company. If they responded "24 hours a day" the interviewers
probed this response to elicit a more exact time (in hours) of time
spent with direct care for patients. For hospice users and non—users
the mean hours spent in direct care was 13.6 and 8.8 hours respectively.

Patients were mostly male (60.2%, N=74) as caregivers were
predominantly female (73.2%, N=90) as illustrated in Table 2. In 80.5%
(N=99) of the cases, patients were spouses of the caregivers, 9.8%
(N=12) were mothers of caregivers (Table 3). There were more mothers
and mother-in-laws in the hospice non—user group than in the use group.
There were two patients with caregivers whose relationship was given as
"friend". These most likely were caregivers who were living with the
patient and considered as a relative due to the nature of the

relationship.

45

 

 

 

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49

The mean age of patients was 62.7 years and ranged from 24.5 to
81.9 years (Table 2). For caregivers the mean age was 56.88 years and
ranged from 28 to 78.8 years. Caregivers in the hospice user group were
about 3.3 years older than the non-user caregivers when means were
compared.

The most frequent primary sites of patient cancers were lung,
breast, colorectal or lymphoma (Table 4). There were larger percentages
of lung, prostate, colon/rectal, gynecological and head and neck cancers
in the hospice user group and a greater percentage of breast, lymphoma,
gastrointestinal and other cancer sites in the hospice non-user group.

Before frequencies and means were computed using scale scores,
reliability analyses were done on the ADL, IADL, and HCA items as
grouped in Table 5. Mouth care was included as an AOL item based on
both the reliability analysis and conceptual considerations. Mouth
care, for many, includes brushing teeth and caring for dentures and has
been included in AOL measures in past studies (Fortinski, Granger &
Seltzer, 1981). It also correlated fairly well with other ADL items
with bivariate correlations ranging from .33 to .52. The coefficient
alpha for the 11-item ADL scale was .90 and could not be improved though
the elimination of any of the listed items.

The IADL 6-item scale also was evaluated for reliability and
inter-item correlations. The household IADL activities (shopping, light
housework, laundry and cooking) correlated very well with each other and
formed a well-defined subscale. ,However, the two other IADL items
(transportation and money management) did not correlate well with the
household IADL activities, although moderately well with each other at

.33. Subsequently, these two IADL subscales are treated as separate

50

 

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Table 5

Items Used in ADL, IADL, and HCA Scales and Alpha Coefficients

 

ADL Item Scale (11)

Dressing Getting around the house
Combing hair/shaving Getting in and out of bed
Bathing Being lifted or turned
Toileting Incontinence of urine
Walking Incontinence of stool
Mouth Care

N=101 alpha=.90

IADL Item Scale (6)

Shopping Laundry

Light housework Cooking

Money management Transportation
N=101 alpha=.79

IADL Subscales
Household IADL Item Scale (4)

Shopping Laundry
Light housework Cooking
N=101 alpha=.93

Other IADL Item Scale (2)
Money managment
Transportation
N=101 alpha=.49

HCA Item Scale (7)

Medications Ostomy Care
Injections Catheter Care
Bedsores IV Solutions

Dressings for Wounds

N=102 alpha=.66

 

 

52
activity complexes. Given that they vary independently of each other,
comparisons among hospice user groups must take that into account.

Seven skilled care activities were lumped together as HCA. While
all HCA activities correlated positively, indicating that there is a
tendency for them to occur together, these correlations proved to be
moderate yielding an overall alpha of .66 (Table 5). The medication
item had much higher frequency and percentage of assistance need than
the other HCA items. Although the response pattern appeared to resemble
those of the ADL items, it was left in the HCA category due to the
medical/technical nature of medication administration.
am

To determine what cancer patient's functional limitations and HCA
assistance needs were in the last four weeks of life, descriptive
statistics were employed. Frequencies of individual ADL, IADL and HCA
items are listed in Table 6.

Table 7 compares mean scale scores for hospice users, non—users
and the total sample. 0f the 11 ADL items, the greatest numbers of
patients with limitations had assistance needs with showering and
bathing, walking, dressing, and getting around the house. Patients'
need for assistance with bathing/showering and walking were the most
frequent areas of ADL limitations at 86.3% (N=88) and 86.1% (N=87),
respectively. The mean score for the ADL scale was 6.67 (range 0—11,
N=116, and standard deviation of 4.09). Seventy—five percent (75%) or
more of the patients had functional limitations in the areas of
bathing/showering, dressing/undressing, walking, getting around the
house, getting in and out of bed, and using the toilet, bedpan or

commode.

 

 

 

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55

The hospice users had increased frequencies of all ADL limitations
with 97.8% (N=44) of the hospice user group needing assistance with
bathing/showering in the last four weeks of life. Almost all of the
patients in this group also needed assistance with dressing/undressing
(95.6%, N=43) and using the toilet, bedpan or commode (93.3%, N=42).

Of the 6 IADL items, patients only needed assistance with
housework, shopping, cooking and laundry in about one—fourth of the
cases. The hospice users had slightly more patients needing assistance
with laundry and cooking than the non—user group. The most obvious
limitations were arranging transportation and handling money (money
management). Of the total sample, 56.9% (N=58) needed assistance with
handling money while 77.5% (N=79) needed assistance arranging
transportation. The hospice users had greater limitations in this area
than non—users (Table 7).

The transportation item had been examined closely before data
analysis to determine the coding of the "not applicable" response which
stated that the patient did not leave home. To help determine if this
was due to patient preference versus limitations in mobility or
function, crosstabulations were performed with AOL "not applicable"
response. Thus it seemed as if patients were truly limited in these
activities and it was not just a patient preference that they did not
leave home and "not applicable" responses to the transportation item
were recorded as a positive need for assistance or limitation.

The mean for the household IADL scale was 0.94 (range 0-4,
standard deviation 1.62). The adequacy of this IADL scale to accurately
determine functional ability in these areas is questionable. There were

70.6 to 74.3 percent (N=72 to 75) of responses as “not applicable"

 

 

56

meaning the patient didn't cook, shop, do housework or laundry. As
mentioned before, the sample was 60.2% male patients which may account
for the frequency of these responses. This IADL scale can only reflect
areas of assistance (positive responses) as perceived by caregivers.

The HCA scale had a mean score of 2.06 and a range of 0-7
(standard deviation 1.84). Assistance with medications was needed by
72.5 percent of the patients (N=74) with catheter care and dressings for
wounds the next most frequent HCA needs at 36.3% (N=37) each. As was
the case with AOL activities, the hospice users had greater percentages
of needs for assistance in the all the HCA areas when compared to the
non-users (Table 7).

The mean score for all activities (ADL+IADL+HCA) was 10.69 (range
0-24, standard deviation 6.54) for the total sample responding to these
questions (N=116). The mean score in all activities for hospice users
was 14.05 (N=47) and for non-users was 8.41 (N=69) which was a
noticeable difference between the two groups (Table 7).
W

This question asked if hospice services were used at the time of
the patient's death and, if so, what types of services were used. Of
116 responses to this question, hospice services were utilized in 40.5%
of the cases (Table 8). The most common type of services listed were
nurse aide and nursing services (86%, N=37). A nurse and social worker
combination was used 9.3% of the time (N=4) while a volunteer or lay
person was used by one subject. Nurse aide and nursing services were

obviously the most often utilized services provided through hospice.

57

 

 

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58
Question #3

The sample had been divided into hospice users (N=47) and non-
users (N=69) to compare their total assistance needs as well as ADL,
IADL and HCA scores to determine if there were differences in these
areas of assistance between the two groups (Table 7). For the hospice
users their total assistance mean was 14.04 while the non-users' mean
was 8.41. ADL means also reflected a noticeable difference. The
hospice group ADL mean was 8.66 and the non-users' mean was 5.32. Non-
household IADL means varied between the users and non-users with means
of 1.51 and 0.93 respectively. HCA means varied somewhat with a mean of
2.94 for users and 1.46 for non—users (Table 7). Hospice users had
higher mean scores in AOL, IADL, and HCA as well as in hours of care
provided. This was anywhere from 44% to 66% more assistance needed in
these areas by hospice users.

Applying the ANOVA F-test to these mean differences yielded the
following results (Table 9):

- There were significant differences between the hospice users and
non-users in all activities, AOL and IADL, other activities, and HCA,
but apt in household IADL.

- As seen in Table 9, the hospice use group and the hospice non-
use group differed with an observed significance level of .00 which
supports the hypothesis that there are differences between hospice users
and non-users with respect to AOL limitations. Eta squared was .16
which means that about 16% of the variance in overall ADL limitations

can be accounted for by their hospice use pattern.

59

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61

- The same holds true for the IADL limitations in arranging
transportation and money management. The users and non-users of hospice
again differed significantly (p=.00) in these two IADL areas (Table 9).
Eta squared was less for these limitations at .12. HCA assistance needs
differed significantly between the hospice users and non-users (p-.00)
with a larger eta squared value of .16.

- When all the ADL, IADL and HCA items were totalled, the hospice
use group and the non-use group again differed significantly (p-.00)
with an eta squared value of .18 (Table 9). The hours of care provided
by caregivers for the patients per day during the terminal period also
differed significantly (p=.00) between the group using hospice and those
who did not use hospice (Table 10).

In conclusion, the hospice users and non-users differed enough in
their ADL, IADL (transportation and money management), HCA and total
assistance scores to not accept the hypothesis that the groups were
similar with respect to functional limitations and health care
assistance needs during the terminal cancer period. Differences in
household IADL means were not significant and the null hypothesis is
accepted, with respect to IADL household mean comparisons that there

were no differences between hospice users and non-users in this area.

CHAPTER VI

The focus of this chapter is on the interpretation of findings in
light of the conceptual framework, literature review and methods
employed to analyze the data obtained. A critique of the Anderson-
Newman Model and implications for advanced nursing practice and primary
care as well as recommendations for further research will be included.
Interpretation

Patients' assistance needs in the areas of AOL, IADL, and HCA may
influence use of services such as those provided by hospice agencies.
According to caregivers, hospice services were used in 40.5% of this
sample at the time of patients' death and consisted mainly of nurse aide
and nursing services. Unfortunately, the exact type of nursing services
received was not determined. Nursing services may have included ostomy
care, administration of medications or have been purely custodial,
supportive, or supervisory in nature. The coding category for this
question was very general and was labelled nurse aide/nursing services.
The exact type of nursing or nurse aide services could not be
determined.

There were higher assistance needs in AOL, IADL and HCA activities
in hospice users when compared to hospice non-users. Significant
differences were found between users and non-users of hospice services
in AOL and app—household IADL limitations as well as assistance needed
with HCA. The six IADL items did not correlate well when all six were
combined. The household IADL items seemed to be more reliable as a
scale to determine assistance needs, but could not accurately reflect
the patients' true functional status in this area because of the "not

applicable" responses (patient didn't participate in that activity) and

62

63
wording of questions. It could not be determined if patients were
actually incapable of performing the activity listed or whether the
assistance needed, or response given, was based on role responsibilities
in their household. Total assistance levels, as well as hours of care
per day, also were significantly different for the two groups with
hospice users having higher levels of assistance and hours of care.

The hospice users, overall, had more functional limitations, as
reflected in AOL and IADL assistance, health care assistance needs, and
hours of care per day. More than 75% of the hospice users needed
assistance with 8 of 11 ADL items. Mouth care and incontinence of urine
or stool had the lowest frequencies of assistance needs. Arranging
transportation and money management were the IADL items with highest
frequencies of reported assistance needs and this was most noticeable in
the hospice use.group. Most of the HCA items had low frequencies of
assistance reported except for assistance with medications which was
very high and again, more pronounced in the hospice use group. The
other HCA items listed (injections, bedsores, dressings, ostomy, and
catheter care and IV solutions) had lower frequencies of assistance when
compared to the HCA items for hospice users. Hospice users had greater
assistance needs (p=<.00) and more hours of care per day (p=<.00) thus
supporting the hypothesis that there were differences between hospice
users and non-users.

This findings supports other literature (Morris, 1988; Kidder,
1988; Mar, Guadagnoli & Wool, 1988) and the decreasing functional levels
and increasing assistance they describe as needed by cancer patients
during the terminal phase of cancer. Caregivers will see their family

members with cancer declining functionally and will need to provide

64
assistance with many of the most basic care activities if they chose to
provide care in the home setting. The activities they most likely will
need to assist the patient with will be dressing, walking, showering, or
bathing. This does not exclude the other basic self care items of mouth
care, grooming, cleaning when incontinent of urine or assisting with
mobility. Some caregivers may not be able to assist with these
activities due to their own physical limitations. Some caregivers may
find it challenging and rewarding while others find it very disturbing
or burdensome. Formal and informal assistance from other family
members, friends and/or service agencies such as hospice may be
necessary to maintain the patient in the home as well as provide support
to the caregiver.

Hospice philosophy includes palliative care within the home when
there is a primary caregiver to assume caregiving responsibilities.
Almost 77% (N=36) of hospice users died at home and only 9 of 47 (19.1%)
hospice use patients died in the hospital. This data supports the
ability of hospice to keep patients' terminal days in the home setting
although some of the hospice users had died in the hospital setting at
the end. It could not be determined if this was due to sudden changes
in feelings about a home death by caregivers or patients, a patient
crisis (such as severe respiratory difficulty), or whether hospice
services were actually being provided as a support to the families or
patients despite hospitalization of the patient.
W

The following discussion includes the methodological limitations
encountered during this research study. First, the question, "were

hospice services utilized at time of death?" may have been taken very

65

literally by some caregivers or more broadly by other caregivers. It is
not known the exact time caregivers perceived as “time of death." If
hospice services were utilized, the exact type of services provided by
nurses or nurse aides from hospice could not be determined. Coding
categories did not include specific nursing activities that may have-
been provided. The categories included “providers" only.

The questions about assistance questions were not specific as to

lavel or amount of assistance needed by patients. It was not known

 

whether assistance needed was supervisory only or total physical help.
The IADL items did not seem to address patients' abilities to perform
household tasks. Item clarification such as "need assistance with
shopping, cooking, laundry or cleaning?" would have been useful. If
they had to do them, caregivers would have answered "yes" to these items
because they had been performing the activity for the patient on a
regular basis as part of their regular household role. The household
IADL items may be more gender oriented or more applicable to females.

Household IADL items did not correlate well with transportation
and money management, so they needed to be separated as such into
"household IADL" and "other" IADL categories. It was difficult to
determine functional limitations from questions as worded, particularly
with IADL activities. Thus assistance needs, as perceived by
caregivers, are reported.

Some HCA items had low inter-item correlations which may affect
its use as a scale. Care for bedsores had low correlations with IV's
and catheter care. Further research is needed to support the HCA
grouping as an appropriate scale to measure medical/technical health

care activities for cancer patients, as well as developing a

66
satisfactory scale to measure IADL limitations for both males and
females.

If content validity had been established in all three groups of
items (HCA, AOL and IADL) then all of these care activities could have
been combined into a larger multidimensional ”patient care activity
scale." The IADL, IADL and HCA assistance measures need to be very
clear about activities being addressed. Levels of assistance need to be
included from supervision only to total help and responses need to be
included that would address patient need for assistance if they had to
engage in that activity, if they don't engage in the activity at this
time. IADL scales may need to be less gender oriented to really measure
change in assistance.
ljpfltations of Theoretical Model

Although this researcher could only address a small portion of the
Andersen—Newman service utilization model, some of the individual
characteristics of cancer patients as they relate to the use of hospice
services have been described. This researcher did not attempt to
include all the Andersen-Newman variables that would predict service
use, but selected only to describe some of the individual determinants
and hospice use during the time of cancer patients' deaths.

The Andersen—Newman model included multiple variables that
influence service use. The variables were well-defined and had been
investigated in many prior research studies dealing with service
utilization and the Andersen model (Wolinsky et al., 1983; Aday &
Andersen, 1974). ”Need" was the individual determinant found to most
likely predict service use. "Need" could be reflected in "illness"

level of the patient and illness level could be defined by different

67
measures. The model allowed for the use of assistance needs to describe
patient limitations and thus an illness level or "need" which may
warrant service use.

The Andersen-Newman model did not specifically address some
barriers to hospice use such as: 1) Physician or health provider
preferences for setting of death and care provided to the cancer
patient; 2) Caregivers attitudes about service provided to patient
within a home setting; 3) Caregiver and patient attitudes about hospice
and its' philosophy; 4) Patient preference for care and place of death;
and; 5) Some of the prerequisites for hospice use (as outlined by
hospice) such as the presence of a primary caregiver, needing a
diagnosis of 6 months or less to live and agreeing to basically
receiving custodial and palliative care only.

To make the Andersen—Newman model more applicable to hospice
service use, these barriers would need to be addressed and incorporated
into the individual and societal determinants sections of the model, so
they would be addressed and acknowledged in future research.
meparisons of Findings to Previogs Research

Although this researcher did not examine the functional
limitations and hospice use longitudinally as Morris (1988) and Kidder
(1988) did with the NHS data, this data supported decreased levels of
AOL and IADL functioning and increasing HCA assistance needs during the
patients' last four weeks of life. This study supported the above
mentioned researchers' findings of increasing limitations or patient
dependencies in the terminal phase of cancer. Patients with more
limitations and needs for assistance also utilized hospice services,

particularly nurse aide and nursing services. This researcher has

68

described the assistance needs of cancer patients during their last four
weeks of life and the differences in assistance needs between those that
utilized hospice services at the time of patients' deaths and those that
didn't. High levels of assistance characterize this period of time for
this sample of patients thus making the terminal phase of cancer an
intensive caregiving experience for family members. The demands on
caregivers may be very high and be both emotionally and physically
distressing.

Grobe, Ahmann, & Ilstrup (1981) cited AOL and HCA skills as the
skills most caregivers needed to learn when caring for terminally ill
cancer patients. This researcher's findings would support the need for
such skills with its high levels of limitation in AOL and HCA. Wool,
Guadagnoli, & Mar (1989) and Mor, Guadagnoli, & Wool (1988) had also
demonstrated deteriorating functioning and increased needs with AOL and
IADl activities. This research would also support high patient IADL
needs, in the areas of arranging transportation and money management
during the terminal phase. None the less, this study examined a total
of 24 activities (11 ADL, 6 IADL and 7 HCA) to better describe the
specific areas that assistance was needed in during the last four weeks
of cancer patients' lives. This research included more activities than
any studies mentioned previously and found high levels of assistance at
AOL, IADL and HCA needs during the terminal cancer period as did Grobe,
Wool and Mor. This will be extremely helpful to health professionals
who work with these,caregivers and patients. This information can be
used to help prepare them for the terminal cancer home care experience.

None of the literature found had described all these ADL, IADL,

and health care activities during the last four weeks of life or

69
differences in groups of subjects that had used or not used hospice
services. Previous research studies did not compare ADL, IADL or HCA
activities of hospice users and non-users. This research could not
support the increased level of dependencies over the cancer trajectory
for that was beyond the scope of this study, but it did describe more
accurately, than previously research reviewed, the assistance needs
during the terminal period.

In conclusion, subjects with more ADL, non-household IADL, and HCA
assistance needs used hospice and although assistance needs were also
present for the non-hospice group, they were less than those that
utilized hospice services. Higher illness levels as illustrated by
increased functional limitations, HCA needs and hours of care were
associated with hospice service use. When working with cancer patients
and caregivers and investigating service use, these are important
variables to focus on when using the Andersen/Newman model of service
utilization.

The Roy Adaptation Model of Nursing (Fitzpatrick & Whall, 1989)
had been considered as a theoretical framework for this research
endeavor. Adaptation was the unifying concept within the model and its
basic concepts were person, environment, health and nursing. Nursing
encourages adaptation through use of the nursing process, thus promoting
integrity or health. Although the concepts were not well-defined and
very broad, they could have been applied to the concepts of this
research study. Service use and informal support of families to cancer
patients would have been facilitated through application of the nursing
process. Health, according to Roy, would be more than absence of

disease and includes states of well-being. The patient's well-being

70
during the terminal cancer phase, as well as the caregivers, would have
been the results of this adaptation to terminal illness. Hospice and
CNS services would have facilitated this adaptation. Due to the lack of
research that investigated service use using the Roy Adaptation Model
and the multiplicity of variables that may influence service use, the
Andersen/Newman model was found to be more readily applicable. The
concepts were also better defined for ease of application.

Roy's Model of Adaptation could be useful for research analyzing
services use, but there needs to be further research on the Adaptation
Model and more well-defined concepts to facilitate application of the
model.

lmplications for Nursing Practice

 

The specific activities that were addressed as part of this
research endeavor, particularly the AOL and IADL and health care
activities, may adequately reflect the cancer patients' assistance needs
and functional status during the terminal phase of cancer but some
changes in methodology may be necessary to determine these (see
Implication for Further Research). The description of these limitations
during this phase of cancer may assist health care providers when
arranging resources and preparing caregivers for the task of caring for
their family member during this difficult period. Health care providers
may be able to get an accurate "picture" of patients' limitations by
assessing the ADL, HCA, transportation and money management needs of
patients. When patients reach a certain level of "disability" services
such as hospice or visiting nurse services can be engaged to assist
caregivers and supplement the cancer caregiving situation in the home.

The CNS who is familiar with cancer patients and caregivers may rely

71
upon his/her experience and clinical judgement skills to determine when
added assistance from formal or informal systems is warranted. A home
visit to assess patient limitations and caregiver coping will help
validate caregivers and patients perceived needs for assistance.
CNS Management Plan

This research has helped to describe terminal-phase assistance
needs of a group of patients so that others may better understand the
home care situation of patients and caregivers. The implications for
advanced nursing practice in primary care are many. As part of his/her
management plan, the Clinical Nurse Specialist (CNS) can continually
assess the ADL, IADL and HCA limitations of cancer patients,
particularly during the terminal phase, and identify unmet needs of both
caregivers and patients. The availability of formal and informal
support to these caregiver/patient dyads also needs to be assessed to
help maintain care in the home. The predisposing, enabling and illness
factors listed within the Andersen/Newman framework need to be evaluated
to determine individual needs for assistance so that the CNS may best
serve families and cancer patients. Formal and informal services can
then be mobilized if needed.

Counseling and guidance about the terminal cancer phase and home
care should be provided to caregivers and patients should be included as
part of the CNS's management plan. Other family members and friends can
be a valuable source of informal assistance to caregivers. Family
members and friends could possibly assist with the transportation and
money management needs of patients during the terminal phase. If the
primary caregiver and patient felt comfortable having close family or

friends assisting with personal care they may be able to provide

72
assistance to the patient to walk, bathe or help with other ADL
activities. If such support is not available, then the CNS should help
mobilize resources and agencies, such as hospice, within the community
to help families acquire the help they need. By educating families and
providing patients and caregivers with community resource information,
such as literature about the services provided by hospice organizations,
the CNS can be an effective client advocate to these families. If
resources such as hospice or visiting nurse services are not accessible
or available in the patient's geographic location, then the CNS should
assume the role of patient advocate to do all s/he can to see that these
necessary services are available to caregivers and patients and used
when needed. Active lobbying for these services or letters to
legislators addressing these needs are some ways the CNS can pursue
these needs. As a client advocate, the CNS will assist patients and
caregivers in a care situation they choose whether it be at home or in
the hospital. The CNS as advocate will encourage and help promote
patient rights and preferences as well as help patients maintain optimal
self-care with caregiver assistance when necessary.

The CNS may also serve as a primary care provider to these cancer
patient/caregiver dyads. The CNS may be able to provide primary care
services to these dyads, but for the terminal stage of cancer, this care
may be more custodial and palliative in nature. Primary care providers
would have screened patients for early detection of various cancers,
educated them about their risks for certain cancers, and encouraged them
to choose a lifestyle that would minimize their cancer risk. This
screening and education most likely would have taken place outside a

hospice setting, but as a CNS working with hospice the CNS will be able

73
to influence other family members, particularly caregivers, and educate
them about health maintenance, cancer risks and screening. Caregivers
may need to be reminded and encouraged about their own self—care and
health maintenance practices.

By acting as care coordinator/care manager, the CNS can serve as a
linkage between families experiencing terminal cancer and the health
care system. The CNS may be able to ease the transition from tertiary
care within the hospital to palliative care within the home. If
patients have not opted for palliative care and are pursuing active
treatment the CNS may again help coordinate care services when
necessary. The CNS can serve as a link or mediator between families and
physicians, to communicate patient and family desires to their
physicians. Those desires may include maintaining the cancer patient at
home and decisions not to readmit to the hospital during the terminal
phase.

Once these "linkages" have been made between families and the
health care system, the CNS can evaluate the effectiveness of the
assistance provided. S/he may also sometimes need to serve as counselor
to patients and families that are struggling to make the decision
between palliative care in the home and continuing treatment aimed at
disease suppression.

As an educator, the CNS may help caregivers plan for the terminal
cancer phase and the possible ADL, IADL, and HCA assistance needs that
may arise. Anticipatory guidance can be useful and may be helpful to
caregivers when assessing the informal and formal supports available to
them. By informing caregivers about the activities that patients most

often need assistance with in the last four weeks of life, the

74
caregivers may be able to review the informal assistance of families and
friends that may be available and needed and make informed decisions.
With guidance from the CNS they can prepare to mobilize these resources
when the time comes that patients and caregivers decide they can no
longer cope without added assistance. Sometimes mobilizing these added
resources before the last four weeks may help ease caregivers' burdens.
For some cancer patient/caregiver dyads, added services from formal or
informal sources may not be desirable or necessary. Caregivers may be
very comfortable caring for their patients without this added assistance
but the CNS should be alert to caregiver stress and ineffective coping
on the part of the caregiver and urge caregivers to rely on available
resources such as the nursing, nurse aide, social worker, chaplain or
lay person services of hospice. The availability of the CNS for support
to families during critical times may help keep cancer patients at home
at time of death. The skills and service of the CNS, as well as family,
friend and other formal support services will help improve the quality
of life for terminal patients as well as the caregiver's satisfaction'
with care provided in a home-based setting.

Family members caring for cancer patients during the last four
weeks of their illness may need to learn some skills to provide care in
the home. Patients most often needed help with dressing, undressing,
bathing and walking during this period of time. Caregivers could be
taught techniques to make assistance with dressing easier, especially if
the patient is somewhat lethargic and unable to help with that task.
Giving a bed bath may be a skill that needs to be taught to caregivers.
Good body mechanics need to be employed by caregivers to aid in

transferring the patient from bed to chair or assisting with walking, to

75
protect both the caregiver and patient from injury. The CNS can
evaluate caregiver's skills and see that family care providers learn and
utilize these skills. Caregiver classes are a possibility in certain
geographic locations where there may be an increased need for them.
Stress management and stress reduction techniques are advanced skills of
the CNS that can be shared with caregivers as well as techniques for
problem solving. Stress management and problem solving strategies would
be helpful to caregivers who have not had experience in these areas.
The CNS can also remind and encourage caregivers to call upon these
coping skills during this difficult time of caregiving.

The CNS, as an evaluator, can assess the cancer home care
situation and the feasibility of spending the terminal phase of cancer
within the home for both the patient and the caregiver. The CNS's
intuition experience and judgement will alert him/her to potential
"panic" situations where caregivers and/or patients may hastily forego
home care for an expensive hospital admission. The CNS can help
caregivers manage and cope with these stressful periods and use
techniques such as cognitive reappraisal to help caregivers put
events/situations in perspective. The CNS's experience and knowledge
about this type of home care situation makes them an invaluable resource
to the physicians who provide services to cancer patients and to the
families who care for them.

The CNS can apply a theoretical framework such as the
Andersen/Newman model because of their graduate level education and
select appropriate areas to assess, such as individual determinants, to
decide if services are necessary or helpful in a cancer home care

situation. Because of their expanded education and research experience,

76
the CNS can take a broader look at service use by the cancer dyads and
assess all the components of a theoretical framework and understand why
some may need and utilized services such as hospice or why some dyads
may not use hospice. The CNS will be able to decide because of their
knowledge base and experience, whether or not maintaining cancer
patients at home until time of death is a reasonable and viable option
for families.

In a hospice setting, the CNS can utilize their expert judgement
to determine nursing diagnoses for specific cancer home care situations
and develop a mutually acceptable plan of care for these families.
Because of their advanced knowledge base, the CNS will also be able to
evaluate this plan of care and make necessary changes as situations vary
during the terminal cancer stage. As a result of this research the CNS
may be able to anticipate and predict what the last four weeks of life
may be like for caregivers and patients.

Recommendations for Further Research

As a result of this research study, some suggestions for future
research can be made.

First, researchers should obtain not only caregivers responses to
assistance needs but also patients' ratings of their own limitations and
compare them to determine if caregivers' responses accurately reflect
patient needs in AOL, IADL, and HCA. If caregivers'
responses/perceptions match closely with patients' ratings, then
caregivers' responses alone may be an adequate data base for patient
functional limitations and assistance needs.

The wording of AOL and IADL questions should be changed to include

levels of assistance ranging from supervision only to total assistance

77
and a clarifier such as "If the patient had to perform this activity,
would the patient be able to do so, and with how much assistance?” This
would make household IADL questions less gender or role specific, yet
yield a measurement of limitations in that area. Instead of asking
about "ability to cook" or "assistance with cooking”, wording may be
changed to ask whether the patient was able to prepare own meal or
arrange to have meal provided. The same type of question wording can
apply to laundry, housework and shopping items. The same questions of
this nature in the IADL category would need to be studied to determine
their usefulness together as an IADL scale and to investigate their
correlation with the transportation and money management items. This
will help to establish the reliability and validity of this IADL item
grouping as a scale to be used for both sexes.

Further research is also necessary for clarification of hospice
services used and obtaining information such as: 1) when services were
obtained, 2) what services were utilized, 3) how often utilized, 4) when
they were discontinued (if applicable), 5) the reason why they were
discontinued, and 6) the event that occurred to prompt death in hospital
vs. home setting if that was the case.

As a researcher, the CNS will need to investigate the other
components of the Andersen/Newman service utilization model such as the
norms, resources, organizations and other individual determinants
affecting service use. Further research that is necessary would focus
on and compare the costs for families and the health care system when
the terminal phase of cancer is spent at home. Costs for families would

include equipment and supplies, medication, chore/housekeeping services,

78
transportation costs, skilled care costs, and expenditures not
reimbursed by health insurance, to name a few.

Since this research was a small portion of a larger longitudinal
study, it would be interesting to compare this group of patients' ADL,
IADL and HCA assistance needs with previous data collection points along
with their use of services, particularly hospice or nurse aide/nursing
services. This information would be beneficial to physicians and CNS's
for they could better evaluate patient functioning and anticipate the
terminal stage when functioning declines and services may be most
necessary and beneficial. It would also be useful to know what other
comorbid conditions existed, so that limitations related to cancer, vs.
other conditions, may be distinguished.

Another piece of information that would have been enlightening
would include reasons why some patients died in the hospital while
receiving hospice services. Hospice supports palliative care at home
until the end of the cancer patient's life. Why did death take place in
this expensive environment despite hospice service use? These are some
of the other questions that need to be answered through additional
research studies.

To supplement this researchers' study, more data needs to be
gathered about other services received by patients during their last
four weeks of life. This researcher investigated hospice service use,
but patient may also have received assistance from a public health or
visiting nurse, chore or housekeeping services, social worker services
along with other types of assistance from family or friends. This data
was not gathered for this specific period of time as part of this

research study.

79

It would be useful to have more research dealing with patient and
caregivers knowledge about services provided by hospice. Questions such
as ”What are the barriers to hospice use or care and death in the home
setting for cancer patients?", and "Does hospice use affect quality of
life for patients or lessen caregiver burden?" need to be answered.

More research is necessary to investigate the other determinants
of hospice service use (as addressed in the Andersen/Newman model) to
determine the major areas that would need to be focused on in a home
care for cancer situation. Would it be realistic to evaluate one
important area of the model, such as illness level, to determine the
need for hospice services or would it be necessary to investigate all
the individual determinants? How much variance in service use is
explained by illness level alone?

Support to patients, in the form of a primary caregiver, during
this period of their illness, needs to be investigated more, for hospice
services are provided in the home only to those who have a primary
caregiver providing a majority of the care. Can hospice services also
be provided for patients without primary caregivers? This needs to be
answered because some cancer victims may desire an end to their lives
within their own homes but may not qualify for hospice services because
of a lack of a primary caregiver.

Future research should address caregiver and patient knowledge
about hospice services, availability of these services to all patients,
barriers to the use of hospice or nursing services during the terminal
phase and types of formal and informal support to caregivers during the

last four weeks of life.

80

Lastly, the quality of life for patients and caregiver stress
needs to be compared between those that use hospice or similar nursing
services and those that don't. The outcomes of these types of financial
costs and their effects on physical and mental well-being of both
caregivers and patients.

The intent of this research study was: 1) to describe cancer
patients' functional limitations in AOL, IADL and HCA assistance needs,
as perceived by their caregivers, during their last four weeks of life;
2) investigate their use of hospice services at the time of their death
and; 3) determine if there were differences between hospice users and
non-users with respect to their ADL, IADL and HCA assistance needs.

Patients' assistance needs in AOL, IADL and HCA have been
described for hospice users and non-users as well as the total bereaved
sample. Functional limitations could not be determined in some areas
because of methodological limitations but assistance needs as perceived
by caregivers has been described for these activities. Hospice use
patterns have been determined along with detailing frequencies of
specific hospice services utilized for that particular group of
patients. Finally, the hospice users and non-users have been compared
with respect to their ADL, IADL and HCA needs and the data has supported
significant differences in AOL, non-household IADL and HCA assistance
needs between users and non-users of hospice services. Hospice users
have been found to have significantly higher level of AOL, non-household
IADL limitations, as well as higher levels of assistance with HCA, total

assistance needs and hours of care provided by caregivers.

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Houts, P.S., Harvey, H.A., Simmonds, M.A., Marshall, M., Gottleib, R.,
Lipton, A., Martin, B.A., Dixon, R.H., Gelman, E.S., & Valdevia,
D. (1985). Characteristics of patients at risk for financial
burden because of cancer and its treatment. Journal of
Psychosocial Oncology, 9(2), 15-22.

Houts, P.S., Yasko, J.M., Harvey, H.A., Kahn, S.B., Hartz, A.J.,
Hermann, J.F., Schelzel, G.W., & Bartholomew, M.J. (1988). Unmet
needs of persons with cancer in Pennsylvania during the period of

terminal care. Cancer, 99(3), 627-634.

 

Kane, R.A., & Kane, R.L. (1981). Assessing the elderly: A prapllaal
guide to measurement. Lexington, Massachusetts: Lexington Books,
0. C. Heath and Company.

Katz, S., Ford, A.B., Moskowitz, R.W., Jackson, B.A., & Jaffee, M.W.
(1963). Studies of illness in the aged. The index of AOL: A
standardized measure of biological and psychosocial function.

Journal of the American Medical Association, 199, 914—919.

 

Kidder, D. (1988). The impact of hospices on the health-care costs of
terminal cancer patients. In Mor, V., Greer, 0.5., & Kastenbaum,

R. (Eds.), The Hospice Experiment (pp. 48-68). Baltimore, MD:

 

The Johns Hopkins University Press.

 

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Kirschling, J.M. (1986). The experience of terminal illness on adult

family members. In Petrosino, B.M. (Ed.), Nursing in upspjpe and
Tarminal Cara: Basearch and Pragtlga (pp. 121-138). New York:

The Haworth Press.

Lauer, M.Z., Mulhern, R.K., Hoffman, R.G., & Chmitta, B.M. (1986).
Utilization of hospice/home care in pediatric oncology: A
national survey. Canper Nursing, 9(3), 102-107.

Linn, B.S., & Linn, M.W. (1981). Late stage cancer patients: Age
differences in their psychophysical status and response to

counseling. Journal of Gerontology, 99(6), 689-692.

 

McCusker, J. (1985). The use of home care in terminal cancer. American
Journal of Preventive Medicine, 9(2), 42-52.

Meyers, A.R., Master, R.J., Kirk, E.M., Jorgenson, C., & Mucatel, M.
(1983). Integrated care for the terminally ill: Variations in
the utilization of formal services. The Gerontologist, 29(1), 71-
74.

Mor, V., 8 Masterson-Allen, S. (1990). A comparison of hospice vs.
conventional care of the terminally ill cancer patient. Oncology,
5(7), 85-91.

Mor, V., Greer, 0.5., & Kastenbaum, R. (1988). The hospice experiment:
An alternative in terminal care. In Mor, V., Greer, 0.5., &
Kastenbaum, R. (Eds.), The Hospice Experiment (pp. 1-15).
Baltimore, MD: The Johns Hopkins University Press.

Mor, V., Guadagnoli, E., & Wool, M. (1988). The role of concrete
services in cancer care. Advance Esychosomatic Medicina, 19, 102-

118.

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Mor, V., Morris, J.N., Hiris, J., & Sherwood, S. (1988). The effects of
hospice care on where patients die. In Mor, V., Greer, 0.5., &
Kastenbaum, R. (Eds.), lha_flpsplaa_£xpa:1mapt (pp. 133-146).
Baltimore, MD: The Johns Hopkins University Press.

Morris, J.N., Sherwood, S., Wright, S.M., 8 Gutkin, C.E. (1988). The
last weeks of life: Does hospice make a difference? In Mor, V.,
Greer, 0.5., & Kastenbaum, R. (Eds.), iha Hpspice Expapimant (pp.
109-132). Baltimore, MD: The Johns Hopkins University Press.

Oberst, M.T., Thomas, S.E., Gass, K.A., 8 Ward, S.E. (1989). Caregiving
demands and appraisal of stress among family caregivers. Qappa;
Nprslpg, 12(4), 209-215.

Petrosino, B.M., (1986). Research challenges in hospice nursing. In
Petrosino, B.M. (Ed.), Nursing in Hospice and Terminal Care:
fiasaarch apd Practica (pp. 1-10). New York: Haworth Press.

Prigerson, H. (1991). Determinants of hospice utilization among
terminally ill geriatric patients. Home Health Servipes
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(1989). Aging and breast cancer: A case-control comparison of
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Stetz, K.M. (1987). Caregiving demands during advanced cancer: The

spouse's needs. Cancer Nursing, lQ(5), 26-268.

86

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Wright, K., 8 Dyck, S. (1984).

patient's family members.

Expressed concerns of adult cancer

gangar Nursing, 1(5), 371-374.

 

APPENDIX A

Consent Form

(patient) 011

MICHIGAN STATE UNIVERSITY
Cancer Family Care Study
CONSENT FORM

The study in which we are asking you to participate is designed to learn
more about the ways in which caring for a family member with cancer
affects the person providing the care.

Over the next 12 months, family caregivers will be interviewed by a
member of the Family Care Study research staff. The initial interview
will take approximately one hour to complete, and will be conducted over
the telephone.

Following that, caregivers will be asked to complete a written
questionnaire, which will be mailed. A.member of the research team will
call at 3, 6, 9, and 12 months. These interviews will be considerably
shorter in length, taking approximately 10 to 20 minutes at the 3 and 9
month interview, approximately 30 minutes at the 6 and 12 month
interview, and will be conducted over the telephone.

If you are willing to participate, please read and sign the following
statement:

1. I have freely consented to take part in a study of family
caregivers and patients with Cancer conducted by the College of
Nursing and the Department of Family Practice, College of Human
Medicine, at Michigan State University.

2. The study has been described and explained to me and I understand
that my participation will involve.

3. I understand that participating in this study is voluntary and my
decision will in no way affect my current or future health care.

4. I understand that I may withdraw from participation at any time
without penalty to me by calling 1-800-654-8219.

5. I understand that the results of the study will be treated in
strict confidence and, should they be published, my name will
remain anonymous. I understand that within these restrictions,
results can, upon request, be made available to me.

6. I understand that no immediate benefits will result from taking
part in this study, but am aware that my responses may add to the
understanding of health care professionals of the experience of
being responsible for a family member with cancer.

7. I understand that a member of the Family Care Study research staff
will need to review my medical history. I consent to allow access
to my medical files and understand that this information will
remain confidential.

8. Should I have any questions about my rights as a subject for this
research, I may contact the Clinical Research Office at
(313) 572-5470.

I, , state that I understand
what is required of me as a participant and agree to take part in this
study.

 

Signed Date
87

 

(caregiver) Oll

MICHIGAN STATE UNIVERSITY
Cancer Family Care Study
CONSENT FORM

The study in which we are asking you to participate is designed to learn
more about the ways in which caring for a family member with cancer
affects the person providing the care.

Over the next 12 months, family caregivers will be interviewed by a
member of the Family Care Study research staff. The initial interview
will take approximately one hour to complete, and will be conducted over
the telephone.

Following that, caregivers will be asked to complete a written
questionnaire, which will be mailed. A member of the research team will
call at 3, 6, 9, and 12 months. These interviews will be considerably
shorter in length, taking approximately 10 to 20 minutes at the 3 and 9
month interview, approximately 30 minutes at the 6 and 12 month
interview, and will be conducted over the telephone.

If you are willing to participate, please read and sign the following
statement:

1. I have freely consented to take part in a study of family
caregivers and patients with Cancer conducted by the College of
Nursing and the Department of Family Practice, College of Human
Medicine, at Michigan State University.

2. The study has been described and explained to me and I understand
that my participation will involve.

3. I understand that participating in this study is voluntary and my
decision will in no way affect my current or future health care.

4. I understand that I may withdraw from participation at any time
without penalty to me by calling 1-800-654-8219.

5. I understand that the results of the study will be treated in
strict confidence and, should they be published, my name will
remain anonymous. I understand that within these restrictions,
results can, upon request, be made available to me.

6. I understand that no immediate benefits will result from taking
part in this study, but am aware that my responses may add to the
understanding of health care professionals of the experience of
being responsible for a family member with cancer.

7. Should I have any questions about my rights as a subject for this
research, I may contact the Clinical Research Office at
(313) 572-5470.

I, , state that I understand
what is required of me as a participant and agree to take part in this
study.

 

Signed Date

 

88

APPENDIX B

Cornwell Involvement Index

 

10 _ _ _ 1 1—4

Card 9 g a 5-7

Date _ _/_ _/_ _ 8-13

INT 14-15

CORNWELL INVOLVEMENT INDEX INT 6081: _2_ 16
- Study 9 17

(If patient was institutionalized or hospitalized for 30+ days they will be unable
to answer the Cornwell Index. Skip and go to the next instrument.)

In this next set .of questions I'w going to ask you about the assistance your relativ
needed in the last four weeks of life. For each activity I read I'a going to ask if you
relative needed help with that activity.

Within the last four weeks...
1. Did your relative need help with dressing and undressing?

_ was (1) re
_ N0 (2)

2. Did your relative need help with combing their hair or shaving?

__.“YES (1) . 15
‘ _ no (21 _
3. Did your relative need help with taking a shower or bath?
__‘rts (1) 26
___. N0 (_2) -

4. Did your relative need help with using the toilet, bedpan or commode?

_rrss (1) ET
_ "0 (2)

 

IMTERVIEWER: Note that some of the following items have a 'MOT APPLICABLE'
category.

 

 

 

5. Did your relative need help with walking?

___ VES. relative needed help (1) - 22
___ MO, relative didn‘t need help (2)
___ Not applicable. relative did not walk (3)

6. Did your relative need help with getting around the house?

___ XES, relative needed help getting around (1) 23
___ HO, relative did not need help (2)
___ Not applicable, relative did not get around the house (3)

7. Did your relative need help with getting in and out of bed?
res. relative needed help (1) 23

::: NO, relative did not need help (2)
___ Not applicable, relative didn't get out of bed (3)

89

10.

11.

12.

13.

14.

15.

Did your

Did your

Did your

Did your

Did your

Did your

Did you

relative need help with shopping?

_ YES (1)
___ N0 (2)
___ Not applicable, relative didn‘t do

relative need help with the light housework?
_' YES (1)

_ no (2)
___ Not applicable, relative didn't do

relative need help with laundry?

___ YES (1)
___ N0 (2)
___ Not applicable. relative didn‘t do

relative need help with cooking?

___'YES (1)

_ N0 (2)

___ Not Applicable, relative didn‘t do
relative need help with handling his/her own

___:st (1)
_ N0 (2)

ID
Car

show 1.09 (3)

housework (3)

laundry (3)

cooking (3)

money?

relative need help with taking his/her own medications?

___ YES, relative needed help (1)
N0, relative did not need help (2)

::: Not applicable. relative did not take-medications (3)

relative need help with arranging transportation?

___TYES, relative needed help (1)
N0. relative did not need help (2)

::: Not applicable. relative did not leave home (3)

Did your relative need help with ostomy care?

___ YES, relative needed help (1)
N0, relative did not need help (2)

::: Not applicable. relative did not have ostomy (3)

9()

OJ
IOI
IO!

lmIH

{3|

16.

17.

18.

19.

20.

21.

22.

23.

Did

Did

Did

Did

Did

Did

Did

Did

y0ur

your

your

your

your

your

your

your

relative
relative

relative

ID _
Card 9 Q

IGJIH

need help with giving injections?

YES. relative needed help (1) 23
ND. relative did not need help (2)

Not applicable. relative did not need injections (3)

need help with mouth care?

YES. relative needed help (1) 23

N0. relative did not need help (2)
Not applicable. relative did not need mouth care (3)

need help with catheter care?

'YES. relative did need help (1) 35

relative

N0. relative did not need help (2)
Not applicable. relative did not need catheter (3)

need to be lifted or turned (in bed or chair)?

'YES (1) §E

relative

relative

relative

llll

relative

_—
___——

ND. relative did not need to be lifted or turned (2)
Not applicable, relative did not need to be lifted or turned (3)

need help to be cleaned up when incontinent of urine?

‘YES (1) §7

N0. 935 used diapers. Depends. catheter. pads (2)
Not applicable. relative not incontinent of urine (3)

need care for bedsores?

YES (1) §§
N0 (2)
Not applicable. relative did not have bedsores (3)

need help to be cleaned up when incontinent of stool?

YES. needed help (1) .

No. but used diapers. Depends. pads. etc. (2)

N0, relative cared for self (3)

Not applicable. relative not incontinent of stool (4)

:3!

receive intravenous solutions at home?

YES (1)
N0 (2)

éfl

9].

 

 

 

 

 

 

 

 

 

 

 

 

 

 

ID _ _ _ 1
Card 9 Q g
24. Did your relative need dressings for wounds (or drains)?
__YES (1) T1
:N0 (2)
25. How many hours per day did you provide direct care for your relative
(include: time spent supervising patient and caring for activities;
exclude: time spent keeping relative company)? (WRITE IN HOURS)
(hours per day) __
42 43
INTERVIEHER: If caregiver answers 24 hours per day. probe this
with the following: 'How many hours of free time did you have in
a usual day?‘
26. How many hours per day did you spend time sitting and keeping your
relative company, or just talking with them? (write in hours)
' 7:3 45
(hours per day)
27. Did you ever find the need to make adjustments to your home to
help with your relative' s care? __
45
YES (1) ___ NO (2)
37 7433‘
IF YES: Hhat type of adjustments did you make?
Please list types of adjustment: 35 55
51 32
28. Did you have to obtain special equipment to provide care? __
' 53
___ YES (1) ___ NO (2)
E? 55
IF YES: Hhat type of special equipment?
Please list types of equipment 33 —7
3'8' 35

 

 

 

€92

 

APPENDIX C

Human Subjects Approval

MICHIGAN S'I'A'I’Ii UNIVERSITY

 

(MINI in HM ”£0“!an M"! “van“ I \\l IA.\\IN(. - MICHIGAN - a“... mu.

AN!) ”IAN (M II" (¢."“IA“ KNUUI

February 5, 1992

Lynn N. Swick
1265 Scott Dr.
East Lansing, MI 48823

RE: ASSISTANCE NEEDED BY CANCER PATIENTS DURING THEIR LAST FOUR HEEKS OF LIFE
AND USE OF HOSPICE SERVICES, IRB 192-035

Dear Ms. Swick:

The above project is exempt from full UCRIHS review. The proposed research
protocol has been reviewed by another committee member. The rights and welfare
of human subjects appear to be protected and you have approval to conduct the
research.

You are reminded that UCRIHS approval is valid for one calendar year. If you
plan to continue this project beyond one year, please make provisions for
obtaining appropriate UCRIHS approval one month prior to January 31, 1993.

Any changes in procedures involving human subjects must be reviewed by UCRIHS
prior to initiation of the change. UCRIHS must also be notifed promptly of any
problems (unexpected side effects, complaints, etc.) involving human subjects
during the course of the work. '

Thank you for bringing this project to my attention. If I can be of any future
help, please do not hesitate to let me know.

Sincerely,

   
   

 

, Ph
University Committ
Human Subjects (UCRI

., hair
on R search Involving

DEW/deo

cc: Dr. Barbara Given

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93

 

 

 

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