a comparative study of between beginning and …
TRANSCRIPT
A COMPARATIVE STUDY OF
OBSERVATIONS OF TERMINAL DEHYDRATION
BETWEEN BEGINNING AND EXPERIENCED HOSPICE NURSES
A THESIS
SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS
FOR THE DEGREE OF MASTER OF SCIENCE
IN THE GRADUATE SCHOOL OF THE
TEXAS WOMAN'S UNIVERSITY
COLLEGE OF NURSING
BY
JEAN M. FLICK RN, BSN
DENTON, TEXAS
DECEMBER 1990
TEXAS WOMAN'S UNIVERSITYDENTON, TEXAS
To the Dean for Graduate Studies and Research:
I am submitting herewith a thesis written by Jean M. Flickentitled "A Comparative Study of Observations of Terminal Dehydration Between Beginning and Experienced Hospice Nurses." I have examined the final copy of this thesis forform and content and recommend that it be accepted in partial fulfillment of the requirements for the degree ofMaster of Science, with a major in Nursing.
We have read this thesis andrecommend its acceptance:
tl!l�ttt;✓ ◊2} _ _)
{?k_M;__/.� Charlotte PatrickMajor Professor
;;,xed
j-1 �
Dean for Graduate Studies and Research
A COMPARATIVE STUDY OF OBSERVATIONS OF TERMINAL DEHYDRATION
BETWEEN BEGINNING AND EXPERIENCED HOSPICE NURSES
THESIS ABSTRACT
DECEMBER 1990
The purpose of this study was to compare the
differences in observations related to terminal dehydration
in hospice clients between beginning and experienced hospice
nurses. A non-experimental comparative study design was
used. A non-probability convenience sample of hospice
nurses was identified. Nurses meeting the criteria for each
group completed a Likert scale questionnaire related to
observations of terminal dehydration. Mean scores for each
group were compared for statistical significance using a
two-tailed t test for independent samples.
Statistical analysis supported the research hypothesis
with a probability of p < .02. This suggests that hospice
nurses with experiential knowledge of terminal dehydration
in hospice clients identified more positive observations of
this process than did beginning hospice nurses.
iii
TABLE OF CONTENTS
ABSTRACT . . .
LIST OF TABLES .
Chapter
. . . . . . . . . . . . . . .
I.
II.
III.
IV.
v.
INTRODUCTION . . . . . . . . . . . . . . .
Problem of Study . . . .Justification of the Problem . . . . Conceptual Framework . . . . . . . . . . Assumptions . . . . . . . . Hypothesis . . . . . . . . . Definition of Terms . . . . . . . . . . Limitations . . . . . . . . . . Summary
REVIEW OF LITERATURE . . . . . . . . .
Summary . . . . .
PROCEDURE FOR COLLECTION AND TREATMENT OF DATA . . . .
Setting . . . . . . . Population and Sample . Protection of Human Subjects Instrument . . . . . . . . Validity and Reliability . Data Collection . . . .Treatment of Data . . .
ANALYSIS OF DATA
Description of Sample . Findings . . . . . . . . . Summary of Findings . . . .
SUMMARY OF THE STUDY
. . . . . .
. . . . . . .
Summary . . . . • . . . . . . . . . Discussion of the Findings . . . Conclusions and Implications . . . Recommendations for Further Study .
iv
iii
vi
1
2
2
4
6
6
7
8
8
9
24
27
27
28
29
29
30
31
31
33
33
36
37
38
38
39
40
41
REFERENCES
APPENDIX
A. Letters of Permission
B.
c.
Cover Letters
Instrument .
V
42
45
50
54
Table 1
Table 2
LIST OF TABLES
vi
35
36
CHAPTER 1
INTRODUCTION
Food and water, the basic sustenance of life, are of
concern to us all. We feel this concern most keenly when we
are caring for our loved ones who are sick or dying.
Providing these basics elements offers us the comfort that
we are doing something concrete to express our love, and
that where there is nourishment there is life. The time
when a loved one is no longer able to swallow can be
extremely stressful for the caregivers as they recognize
that even those simple but very symbolic offerings of food
and water can no longer be of help.
our technological society has developed many forms of
artificial nutrition and hydration therapies. As dying
persons become dysphasic, caregivers naturally consider
turning to alternate forms of nutrition and hydration
therapy to assure the comfort of their loved one during the
final days.
Opinions have been expressed recently in the health
care literature which question the use of hydration therapy � . ' �
in the stage of terminal dehydration, suggesting not only • ". 'i. ''f' �
that hydration therapy may not be beneficial, but that, in
fact, it may lead to additional discomfort of the dying
person.
1
2
Problem of Study
The work of hospice nurses is centered around the
provision of care to terminally ill and dying patients.
This places them in a position to frequently observe the
stages of the dying process. Because of the philosophy of
the hospice movement, a large number of these deaths occur
without the use of artificial hydration during the stage of
terminal dehydration. Knowledge of the observations and
perceptions of this group of nurses could be a beginning
step in our understanding of the experiences of persons
undergoing terminal dehydration, and those therapies which
are most likely to maintain the highest level of comfort.
The purpose of this study will be to investigate the
question:
"Is there a difference in the observations of the state
of terminal dehydration in hospice clients between
experienced and beginning hospice nurses?"
Justification of the Problem
Care of the terminally ill patient experiencing
dehydration is common to nurses in a variety of clinical
settings, from the acute care inpatient facility to chronic
care facilities to home care. For many patients and their
families, there comes a point in time when decisions must be
made regarding the use of IV therapy when the patient will
no longer be able to swallow food and fluids by mouth.
Brown and Chekryn (1989) stated that there are two main
factors influencing the management of dehydration. These
are patient comfort and the emotional significance of food
and fluid, the more prominent of which is patient comfort.
This is supported by Schmitz and O'Brien (1986) who
reported that family members of dying persons are more
concerned with patient comfort than length of life at this
point.
3
As patients and family members deal with this
difficult, and many times emotional, decision they
frequently turn to the nurse for teaching and support.
Nurses are often in a position to provide the patient and
family with the "one-to-one discussion with a trusted
caregiver" (Zerwekh, 1984b, p. 41), which is most urgently
needed during the decision making process. Skapura and
Bohnet (1982) conducted a survey of twenty caregivers of
home hospice clients and found that two of the top five most
helpful nursing behaviors included "answer my questions
honestly, openly and willingly" and "teach me how to keep
the patient physically comfortable".
In order to provide this high quality nursing care
during a time of patient and family crisis surrounding a
highly emotional and many times controversial issue, nurses
need a clear understanding of the psychological and
physiological processes of the dying process and of terminal
4
dehydration, as well as a thorough knowledge of the benefits
and side effects of "routine" medical therapies such as IV
therapy. Brown and Chekryn (1989) suggested that nurses
often feel ill-prepared to respond in this situation because
they perceive their knowledge base to be inadequate. A
knowledge of the observations of hospice nurses who have
frequently cared for patients experiencing terminal
dehydration is one beginning step in acquiring an adequate
knowledge base. Corcoran (1986) studied the three types of
knowledge used by nurse experts and concluded that
experiential knowledge, while seldom explicit or shared, is
an "important component of a discipline's body of knowledge"
(p. 40).
Conceptual Framework
The proposed study is based on Roy's Adaptation Model
as the conceptual framework.
The goal of nursing in the Roy Adaptation Model is to
promote the individual's adaptation in the four adaptive
modes of physiologic needs, self-concept, role function and
interdependence. Within these four modes are coping
mechanisms whose activity is aimed at integrity, and which
are manifested as adaptive or ineffective behaviors (Roy,
1980, pp.183-184). -
The process of terminal dehydration is a coping
mechanism within the mode of physiological needs. The
5
originating source of difficulty varies from individual to
individual but starts with the original disease process. In
the terminally ill individual, the coping mechanisms have
failed to maintain the integrity of the patient, resulting
in the symptoms (ineffective adaptive behaviors) of
nausea/vomiting, lethargy, diminished level of
consciousness, anorexia and dysphagia. As these excesses
within the physiologic mode continue, the result is the
state of terminal dehydration. At this point, the goal of
the patient and family is usually one of patient comfort
until death.
The intervention foci of nursing are the symptoms
identified above, as well as any other concurrent symptoms
such as pain, anxiety, dyspnea, cough, tremors or fever.
Roy views the nurse as an "external regulatory force to
modify stimuli affecting adaptation" (Roy, 1980, p. 186).
The mode of nursing intervention is to increase, decrease,
or maintain stimulation by the focal, contextual or residual
factors influencing the adaptive behavior. The nurse must
assess both the strength of these stimuli and the patient's
adaptation zone--the person's adaptation level which
indicates the range of stimulation that will lead to an
adaptation response in the direction of the desired goal.
Based on this assessment, the nurse must formulate a
plan of care. consideration of the benefits and risks of
6
possible medical therapy such as IV therapy must be made.
IV therapy must be considered in terms of the strength of
the focal stimulus--the disease process, the presentation of
adaptive versus ineffective behaviors by the patient, the
patient's adaptation zone--ability to respond positively to
future stimuli, and the goals of the patient and family-
what desired outcome they perceive as being positive and
toward health at this time.
Based on this assessment, the nurse can develop and
implement a plan of care which will include open and honest
discussion, clarification of options, teaching and support.
Assumptions
1. Respondents will answer the questionnaire truthfully
and based on their own observations.
2. All persons adapt to a change in their internal or
external environment in a positive or negative manner.
3. Roy's goal of nursing is promoting positive
adaptation.
Hypothesis
The hypothesis of this study is: Experienced hospice
nurses will identify more positive observations of the state
of terminal dehydration in hospice clients on a written
questionnaire than beginning hospice nurses. The independent
variable is the experience of the hospice nurse. The
dependent variable is the observations of the state of
7
terminal dehydration. The population is hospice nurses.
Definition of Terms
Hospice nurses is defined as those registered nurses
working in an inpatient or outpatient setting designated as
a hospice by inclusion in the National Hospice Directory.
Experienced is defined as those hospice nurses who
state, per questionnaire, that they have provided direct
patient care to hospice clients for a minimum of one year
and have observed ten or more hospice clients in the state
of terminal dehydration.
Beginning is defined as those hospice nurses who state,
per questionnaire, that they have provided direct patient
care to hospice clients for no more than six months and have
observed five or less hospice clients in the state of
terminal dehydration.
Terminal dehydration is defined as the state in which
an individual has received no nutritional or fluid intake
for at least three days before death.
Observations will be determined by responses made to a
written questionnaire on which the respondents will identify
the level of frequency of occurrence of events associated
with terminal dehydration that most closely reflects their
clinical observations. Frequency of occurrence will be
designated by a Likert scale measurement.·
8
Limitations
1. The study contained no control over the setting in
which the respondents complete the questionnaire.
2. There was no ability to generalize the data to the
target population due to the lack of random sampling.
3. The study contained no control over whether the
hospice directors give the questionnaires to the appropriate
beginning and experienced nurses.
summary
The provision or withholding of hydration therapy in
the terminally ill individual during the dying process
remains a controversial issue. Recent studies indicate that
IV therapy may in fact cause increased discomfort during the
final days of life, and that the events associated with the
state of terminal dehydration are not necessarily
undesirable or highly painful as is often believed in both
the general public and the health care community.
This study compared the observations of beginning and
experienced hospice nurses in an effort to determine what l '"
experiential knowledge is gained through observation of
clients with terminal dehydration. Hospice nurses were
chosen as the study population because the nature of their
work places them in close and frequent proximity with dying
persons who choose not to receive IV therapy.
CHAPTER 2
REVIEW OF LITERATURE
Care of the dying is often seen as "simply palliative"
in nature. However, care of the dying is in fact a complex
art that "requires deliberately creating an environment that
allows a peaceful death" (Wanzer et al., 1989). As a
terminal illness progresses, the adaptive processes of the
physiologic mode of the individual frequently lead to the
inability of the individual to swallow food and/or fluids.
This often leads to the state known as terminal dehydration
in the final days of life.
This can be a highly stressful and difficult time for
the family and caregivers because they have lost the
opportunity to nurture their loved one in the most basic of
all forms, the provision of food and drink. Many caregivers
must now come to grips with the reality of the seeming
finality of the patient's impending death. During this
time, family and caregivers focus on ways of offeringI k r,
comfort and preventing pain and suffering for the dying'i j. ·.t
person. These caregivers often find themselves struggling
with the question of whether or not to pursue artificial
feeding or hydration therapy to provide comfort to their
loved one. The professional nurse can play a major role in
9
10
the support and teaching of the patient and family as they
deal with this issue. In order to effectively assist the
patient and caregivers, the nurse must have a clear
understanding of a number of complex factors that all
influence the decision of the family during this time. This
discussion will focus on the following factors: the
definition and clinical symptoms of terminal dehydration,
the potential benefits/drawbacks of hydration therapy during
terminal dehydration, and the relevant ethical principles.
Each of these topics will be discussed in the following
literature review.
The Process of Terminal Dehydration
Because sodium and water metabolism are closely
interrelated, the term dehydration is frequently used as a
"catch-all" term to describe not only water depletion, but
combined sodium and water deficits as well (Levinsky, 1977).
This is supported by Billings (1985) who defined dehydration
as "a loss of normal body water" but described the usage of
the term dehydration as "imprecise .•. to describe conditions
with differing causes, symptoms, and management" (p. 808).
In her discussion of terminal dehydration, Musgrave
(1990) listed three types of dehydration: hyponatremic,
hypernatremic, and isotonic. She defined terminal
dehydration as any one of these states when experienced by a
person within a few days of death.
11
The first of these is hyponatremic dehydration, a state
in which the loss of sodium is greater, proportionately,
than the loss of fluid, resulting in body fluids that are
"diluted by an excess of water relative to total solute"
(Levinsky, 1977, p. 367). Billings (1985) reported on the
symptoms of experimentally induced hyponatremic dehydration,
which included weight loss, decreased skin turgor, dry
mucous membranes, and postural hypotension. He stated that
neuropsychiatric symptoms such as weakness, apathy,
lethargy, restlessness, confusion, delirium, stupor and coma
are more frequently seen when the sodium is decreased
rapidly, although Levinsky (1977) identified these
neuropsychiatric symptoms as the primary clinical feature
of hyponatremia. Billings (1985) also listed anorexia,
nausea, and vomiting as symptoms which have been associated
with hyponatremic dehydration, although his understanding is
that these symptoms are more likely to be related to the
cause of the dehydration, rather than the effects of it.
Hypernatremic dehydration, on the other hand, is a
"disproportionate loss of fluid to sodium, in which the
body attempts to compensate by filling the intracellular
fluid compartments with fluid drawn from cells" (Musgrave,
1990,p. 63). Billings (1985) referred to hypernatremic
dehydration as "pure water loss" (p. 809). The primary
clinical symptoms of hypernatremic dehydration have been
12
identified as intense thirst and mental status changes
including confusion, lethargy, obtundation and coma
(Billings, 1985 and Levinsky, 1977).
The third type of dehydration identified by Musgrave
( 1990) is isotonic, in which comparably proportionate
amounts of sodium and water are lost. Billings (1985)
described the state of dehydration most likely to occur in
the terminally ill person as a combination of both water and
sodium depletion. Levinsky (1977) also reported that
combined deficits of sodium and water are far more frequent
than isolated deficits of each component. He suggested, in
fact, that the term dehydration be reserved for pure water
depletion leading to hypernatremia, and that the term volume
depletion be used for combined deficits.
Levinsky (1977) further identified a common cause of
volume depletion as decreased salt and water intake,
possibly concurrent with vomiting and/or diarrhea. This
describes a common clinical picture of the terminally ill
person whose adaptive processes may include diminished oral
intake and vomiting.
symptoms that may occur as the result of isotonic
dehydration, or volume qepletion, include decreased skin
turgor, increased pulse, postural hypotension, decreased
urine output, lethargy, weakness, confusion, dry mouth, and
mild thirst (Levinsky, 1977, zerwekh, 1983, and
13
Billings,1985).
After extensive work with the terminally ill and dying,
Saunders and Baines (1983) identified dry mouth as the only
common symptom of dehydration in dying patients. Zerwekh,
(1983) a hospice nurse, reported dry mouth to be the most
discomforting effect of dehydration in the dying patient.
In fact, she suggested that dehydration resulted in a number
of beneficial effects to the dying person. One of these is
diminished urinary output resulting in less need for use of
the bedpan, less episodes of urinary incontinence as the
patient becomes weaker, and a decreased likelihood of need
for urinary catheterization. She also identified the
potential for less bouts of vomiting as the result of
decreased gastrointestinal fluid. She stated that a
decrease in pulmonary secretions will reduce coughing and
respiratory congestion, and a reduction in pharyngeal
secretions may provide relief from choking and drowning
sensations. Decreased edema may reduce pressure symptoms
both peripherally and locally at the tumor site. Finally,
she suggested that the decreased fluids and altered
electrolyte balance may serve as a "natural anesthesia"
during the final days of life.
A number of other clinicians support Zerwekh's
assertion that dehydration may provide a number of positive
benefits to the dying person. Dolan (1983) reported on an
14
informal clinical study conducted by her hospice agency in
which it was found that respiratory distress and the need
for tracheal suctioning were decreased in those dying
patients who did not receive IV fluids following renal
shutdown, as compared to a similar group of hospitalized
patients who did receive IV fluids following renal shutdown.
Schmitz & O'Brien ('1986) reported on the observations
of hospice nurses working in a six bed hospice inpatient
unit. These observations included that following a
spontaneous decrease in oral intake, their patients
experienced decreased nausea and vomiting, decreased
abdominal pain (particularly for those patients with a bowel
obstruction, liver disease or malignant ascites), decreased
urine output, decreased pulmonary secretions with resultant
decrease in coughing, congestion and shortness of breath,
dry mouth, and symptoms of electrolyte imbalance including
twitching, muscle spasms, and altered level of
consciousness. These authors also suggested that patients
may experience relief and decreased anxiety when they feel
less pressure to force themselves to eat.
In response to concerns that dying patients with
dehydration were suffering from the effects of electrolyte
imbalance, oliver (1984) reported on a study conducted at
st. Christopher's Hospice in London in which blood samples
were drawn from 200 patients. Twenty-two of these patients
15
died within forty-eight hours of the venipuncture. Of these
22 patients, twelve had essentially normal results, while
the other ten were found to be uremic and hypercalcemic.
Oliver {1984) concluded that in all 22 of these patients,
who "died peacefully without distress, the electrolyte
balance was essentially normal" (p. 631).
Miller and Albright (1989) reported the results of a
questionnaire completed by thirty hospice nurses in Florida.
In response to the question "In patients dying with
dehydration how is the quality of life?", 77% of the nurses
responded that the patients "don't suffer much", 66%
reported "less problems with secretions" and 7% identified
that patients "suffer severe thirst".
Andrews and Levine (1989) conducted a survey of hospice
nurses in New Jersey and Pennsylvania. Of the 96
respondents, 91% reported that they had observed a patient
who did not receive any form of food or fluid for at least
the last three days prior to death. The researchers used a
Mann-Whitney u statistical analysis to compare the
perceptions of those nurses who had observed a patient
experiencing terminal dehydration and those who had not.
They concluded that "hospice nurses who have observed
patients dying in a dehydrated state have a more positive
perception of dehydration than those who have not" (p. 32).
Their findings support the idea that dehydration may be
16
beneficial in the imminently terminal stages of life. They
found that a majority of the hospice nurses surveyed agreed
that dehydration results in less vomiting and less choking
and drowning sensations, and that dehydrated patients rarely
complain of thirst. Eighty-two percent of the nurses
disagreed with the statement that dehydration is painful.
Billings (1985) suggested that fluid depletion in the
dying person should be considered as "a condition with
relatively benign symptoms" (p. 810). There does seem to be
some support in the literature which concurs with the
understanding of Miller and Albright (1989) that loss of
appetite and inability to swallow food and water is an
"adaptive process that allows the patient to die with less
suffering" (p. 38).
The Use of Hydration Therapy
Lynn (1986) identified the basic question which health
care providers must ask regarding any and all interventions
as "Why is this being done for, and to, this patient?" (p.
19). zerwekh (1984b) explored the concept of hope in the
dying person, and described the hope of a person whose death
is becoming more certain as changing to a hope for a good
quality of life in whatever time remains. This hope for a
good quality of life includes "relief from fear, symptom
relief and the power to choose how to live at the end of a
lifetime" (p. 35).
17
One of our responsibilities as health care
professionals is to strive to support this hope through
whatever means possible. This includes the judicious use of
therapies which will diminish symptoms, provide relief from
fear, and promote the power of personal choice. In asking
ourselves "why" use hydration therapy, we must therefore ask
ourselves whether or not the use of hydration therapy during
the final days of life will support the hope of an optimum
quality of life for the dying patient and his/her family and
caregivers.
Zerwekh (1984a) recognized that the choice to use or
not use intravenous fluids must always be made on an
individual basis. She identified possible benefits from the
use of intravenous fluids as a possible prolongation of
life, better control of nausea, and the confidence that
"everything is being done". Risks of intravenous hydration
may include prolongation of suffering, aggravation of
symptoms such as vomiting and respiratory congestion, and
the need for caregivers to focus on the technological needs
of maintaining the IV rather than on the human needs.
Brown and Chekryn (1989) summarized the possible risks
and benefits of the use of IV hydration versus no IV
hydration. They identified the following as possible
results of not using IV hydration: decreased vomiting,
dyspnea, choking and peripheral edema; and increased
18
tenaciousness of secretions, dry mouth and thirst. They
suggested that death may be hastened by not using IV fluids.
On the other hand, the use of IV hydration may result in
increased vomiting, dyspnea, choking and peripheral edema,
decreased tenaciousness of secretions, dry mouth and thirst.
While a fluid and electrolyte imbalance can be corrected
through the use of IVs, any possible "natural anesthetic"
effect of electrolyte imbalance would then be lost. These
authors commented that dying may be prolonged through the
use of IV fluids, and that use of IVs may preclude home care
for some persons.
These identified risks are supported by Lynn and
Childress (1986). They concluded that "terminal pulmonary
edema, nausea and mental confusion are more likely when
patients have been treated to maintain fluid and nutrition
until close to the time of death" (p. 53).
Some authors identified that patients who experience
symptoms of electrolyte imbalance may benefit from
rehydration. Musgrave (1990) identified the benefits of
hydration therapy in persons who are either temporarily or
permanently unable to ingest oral fluids. However, she
also pointed out that these benefits are temporary, and the
underlying disease progression may eventually override the
benefits. Schmitz and O'Brien (1986) also suggested that
symptoms such as twitching, muscle spasms, or altered level
19
of consciousness secondary to electrolyte imbalance may be
corrected through rehydration. They did point out, however,
that these symptoms may also be controlled just as well and
less invasively through the use of antispasmodics or
sedatives.
In a survey completed by thirty hospice nurses in
Florida, Miller and Albright (1989) found that only 8% of
the respondents believed that the patients' quality of life
could be improved by the use of more IVs. As we seek to
support the hope of optimum quality of life we must consider
and weigh the benefits and risks of both not using and using
hydration therapies.
Ethical Considerations
Callahan (1986) stated that "the burden of proof for
the withdrawal of nutrition/fluids rests with those who
would withdraw it in a moral society which holds starvation
as repugnant" (p. 66). His statement illustrates the
emotional facets surrounding the ethical considerations
related to IV fluids. our society is one which views the
withholding of food or drink to be not only the cause of
pain and suffering, but as such to be morally reprehensible.
It is our understanding that it is the responsibility of a
just and moral society to assure that these basic
requirements for life are available to all individuals.
As health care providers, our immediate response to
20
pain and suffering is to work.to alleviate it. A typical
response to the inability to swallow food and fluids is to
provide alternative therapies for the patient. Micetich,
Steinecker, and Thomasma (1986) studied the attitudes of
M.D. house staff toward maintenance of IV therapy in a case
presentation of a patient with incurable cancer and anoxic
brain damage following resuscitation. They found that 75%
of the respondents would not discontinue intravenous fluids
even when it was clear that the patient had no hope of
survival. Lynn and Childress (1986) suggested that
physicians feel both the obligation to avoid being the
unambiguous cause of death, and the obligation to provide at
least symbolically meaningful treatment, describing the
continuation of IV fluids, as seen by some physicians, as an
expression of the values of caring and compassion.
Ramsey (1977), however, suggested that we must consider
the morality of only caring for the dying. He identified
the three interrelated distinctions of 1) ordinary vs.
extraordinary care, 2) saving life by prolonging living vs.
prolonging death, and 3) direct killing vs. allowing death.
His understanding was that what may generally be considered
ordinary means may in fact be extraordinary, depending on
the patient's circumstances. He believed that society has
the "obligation to determine when a person has begun to
undergo irreversibly the process of his own particular
21
dying"; and questioned "whether with the process of dying
there ... arises the duty only to care for the dying, simply
to comfort and company with them, to be present to them" (p.
198). Kukura and Anderson (1987) concurred with this
understanding of ordinary versus extraordinary means and
suggested that the distinction between them must include an
analysis of both the effectiveness of the treatment and the
consequences of that treatment to the individual patient.
They defined ordinary care as that which "offers a
reasonable hope of benefit and can be obtained and used
without excessive pain or burden," and extraordinary
treatment as that which "cannot be used without excessive
pain or burden or, if used, would offer no reasonable hope
of benefit" (p. 138-139). They felt that these definitions
can only be realistic when applied to the specific situation
of each individual patient.
Lynn and Childress (1986) questioned whether there may
be circumstances when a procedure may be forgone that might
improve nutrition and hydration. They concluded that there
are three circumstances when no net benefit for the patient
is obtained. These are: 1) when the needed procedures are
so unlikely to achieve improved nutritional and hydration
levels that they could be considered futile, 2) when the
improvement obtained would not benefit the patient even if
it could be achieved, and 3) when the burdens of the
22
treatment outweigh the benefits. They further clarified the
differences between the giving of food and water to the
hungry and thirsty and the administration of medical
hydration and nutrition. Medical hydration more closely
resembles any medical treatment or procedure than it does
that of the normal human gestures surrounding food and
drink. As a medical procedure, therefore, it should be
possible to evaluate the benefits and risks to the patient,
and to recognize that an informed choice may be made which
precludes the use of hydration therapy in certain
situations, such as those listed above.
This argument can be reviewed in the context of several
ethical principles. Knox (1989) identified four key ethical
principles relevant to the decision to withhold or withdraw
"life-sustaining" treatment. These include autonomy,
beneficence, justice, and the ethical integrity of health
care professionals.
Knox (1989) described autonomy in the health care
setting as the right of the patient to make his/her own
choices, and to control what happens to his/her own body.
This right to autonomy must include the right to informed
consent or refusal. Sound information must be available to
the decision-maker to fulfill the patient's ability to
choose and control the events affecting his/her life. In
addition, health care providers must respect not only the
23
individual's right to make their own choices, but must also
respect the choice made. The health care professional must
recognize that respect for individual choice carries with it
the responsibility to help the individual clarify how and
why the choice was made, and to assure that all information
and options, benefits and risks, were presented.
The idea of "doing good" refers to the principle of
beneficence. Knox (1989) stated that "the obligation to
promote the good of the patient is basic to the relationship
between health care providers and patients" (p. 428). To
assure that measures taken are indeed "doing good", we must
investigate the possible benefits and risks of any given
treatment in any given set of certain circumstances, and
apply that understanding from "the patient's perspective"
(p. 428). Closely tied to the principle of beneficence is
the understanding of nonmaleficence. Kukura and Anderson
(1987) defined nonmaleficence as the ethical principle which
says that actions should do no harm. They stated that if
either continuing or withdrawing a treatment results in pain
and suffering to the patient it is difficult to justify such
action, unless superseded by the patient's right to choose
such measures.
The principle of justice implies that all individuals
have the right to equal access to care. Siegler and
Shiedermayer (1987) cautioned that as we as a society become
24
more accepting of the withholding of IV fluids in the dying
patient, we run the risk of potentially serious abuse in the
form of placing consideration solely on the issue of cost
containment, rather than on the issue of just access to
treatment to enhance quality of life.
Knox (1989) also identified the need for all health
care professionals to practice in accordance with the
ethical codes of their respective disciplines. The ANA Code
for Nurses stipulates that professional nurses will practice
with compassion, and will respect the human dignity and
personal autonomy of every patient.
Wanzer et. al. 1 (1989) explored the physician's
responsibility to the "hopelessly ill". They recognized
that the issue of food and water, medical nutrition and
hydration, remains an issue with significant ethical
ramifications. As public awareness and openness toward the
subject of death and dying increases, so does our obligation
to increase our awareness of the benefits and risks of a
treatment as emotion-laden as that of the use of IV therapy
so that we can assure that we are acting not only ethically
but as ?ompassionately as we are able.
Summary
There are several types of dehydration which can occur
under varying circumstances. Isotonic, or combined water
and sodium deficits, has been identified as occurring most
25
frequently during the dying process of the terminally ill.
A number of symptoms may occur as the result of this volume
depletion. Most hospice clinicians recognize dry mouth as
the most commonly observed symptom. Other symptoms may
include nausea, thirst, twitching or muscle spasms,
confusion, lethargy, decreased level of consciousness, or
coma.
Some authors have suggested that certain effects of
dehydration are beneficial to the dying person. Decreased
body fluid may result in decreased peripheral and local
tumor edema, decreased urinary output, decreased respiratory
secretions and decreased gastric secretions. Electrolyte
imbalance may result in providing a "natural anesthesia" for
the patient.
The use of intravenous therapy to treat fluid and
electrolyte imbalance during terminal dehydration should be
evaluated as a m9dical treatment, and as such should be
considered in light of the benefits and burdens to the
patient. Benefi·ts that have been identified in the
literature include prolongation of life, decreased nausea,
decreased symptoms of electrolyte imbalance such as spasms
and confusion, and decreased dry mouth. Burdens that have
been identified include -prolongation of dying, increased
vomiting, increased respiratory congestion, increased
tracheal secretions, and increased edema.
26
Ethical principles to be considered include autonomy,
beneficence, nonmaleficence, justice, and ethical integrity.
Application of these principles implies a responsibility for
the professional nurse to be knowledgeable about the
potential benefits and risks of the provision of hydration
therapy during the �ying process and to apply that knowledge
in his/her practice.
CHAPTER 3
PROCEDURE FOR COLLECTION AND TREATMENT OF DATA
This study is a non-experimental comparative study.
Nieswadomy (1987) defined comparative studies as "those
studies that examine the differences between intact groups
on some dependent variable of interest" (p. 146). The
design is non-experimen�al because there was no manipulation
of a variable, no control group, and no random selection,
which are the criteria required for experimental study cited
by Nieswadomy (1987).
The hypothesis is a simple directional hypothesis with
one independent and one dependent variable. The independent
variable of the degree of experience of the hospice nurse
was identified via the initial portion of the questionnaire
concerned with demographic information. The dependent
variable of observations of the state of terminal
dehydration was measured via the second portion of the ,·-,
questionnaire which included responding via a Likert scale
to a series of statements regarding the state of terminal
dehydration.
Setting
Because this was a survey conducted by mail there was
no control over the setting in which respondents completed
27
the questionnaire.
Population and Sample
28
The target population was hospice registered nurses who
have provided direct patient care to terminally ill and
dying patients in a home or inpatient setting. The sample
population was a sample of convenience. Questionnaires were
mailed to 105 hospices listed in the National Hospice
Organization Directory in Texas, Oklahoma, Colorado, and
Arkansas. A cover letter requested that one beginning and
one experienced hospice RN employed by the agency who met
the qualifications comp�ete the questionnaire. In order to
send follow-up letters to non-respondents, code numbers
designating the name of the hospice were placed at the top
of the questionnaire.
Criteria for selection as a member of either the group
of beginning or experienced hospice nurses was based on the
responses to the questions in the demographic section of the
questionnaire which dealt with number of patients cared for
and length of time employed as a hospice nurse. Beginning
nurses were defined as those nurses who identified that they
had provided direct patient care to hospice clients for six
months or less and had observed five or fewer hospice
clients who had experienced terminal dehydration.
Experienced nurses were defined as those nurses who
identified that they had provided direct patient care to
29
hospice clients for one year or more and had observed ten or
more hospice clients who had experienced terminal
dehydration. All respondents who met these criteria were
included in the study.
Protection of Human Subjects
A confidential questionnaire was used which did not
involve any risk to the participants, therefore qualifying
as category I research, according to the H.H.S. Federal
guidelines and the policies of the TWU Human Subjects Review
Committee. The following statement, in capital letters and
underlined, was used at the top of the questionnaire:
RETURN OF THIS QUESTIONNAIRE WILL BE CONSIDERED TO BE
YOUR CONSENT TO BE A RESEARCH SUBJECT IN THIS STUDY.
Instrument
The instrument used was a two-part written
questionnaire. The first section included demographic
information about the participant. This included: basic
level of nursing preparation, highest degree obtained, years
of nursing experience in a non-hospice setting, months of
experience in the provision of direct patient care to
terminally ill a�td dying patients in a hospice setting, type
of hospice setting in which the participant is employed, and
approximate number of patients cared for who have
experienced the state of terminal dehydration. Two
additional questions were included which relate to the
respondents' perception of their preparation to care for
people with terminal dehydration.
30
The second section of the questionnaire was an
adaptation of a study completed by M. Andrews and A. Levine
and reported in The American Journal of Hospice Care (1989).
Written permission for use of a revised version of the
questionnaire �is obtained. This section consisted of ten
statements about the state of terminal dehydration. Both
positive and negative statements were included.
Participants were asked to identify the response that most
closely reflected their own observations by selecting a
representative number on a four point Likert scale. The
four points were identified as: 1. Almost always,
2. Frequently, 3. Seldom, 4. Almost never.
Validity and Reliability
The questionnaire was sent to five hospice nurse
experts identif i,?.d by the author based on number of years of
experience in the hospice field, participation in the Texas
Hospice Organization in decision-making positions,
presentation at �ospice seminars, authorship of articles
related to hospice nursing, and advanced educational
preparation. These experts were asked to review the
questionnaire for content validity. Responses were received
from four of the nurse experts and their suggestions were
incorporated in the revision of the questionnaire.
Reliability as measured by co-efficient alpha was
0.864. Co-efficient alpha is a measure of internal
consistency.
Data Collection
31
Questionnaires were mailed to the hospice directors of
all hospices listed in the 1989-1990 NHO Directory in 4
states. The mailed packet included a cover letter, 2
questionnaires and a check sheet on which the director could
identify whether questionnaires were given to nurses meeting
the identified criteria. The questionnaires and check sheet
were number coded so that a second letter could be sent to
non-respondents. Three weeks following the initial mailing
follow-up reminder letters were mailed to the directors of
non-responding agencies.
All responses were categorized based on the defined
criteria for beginning and experienced hospice nurses. The
data from each of these two groups were then compared.
Treatment Of Data
The hypothesis was tested by use of a t test for
independent samples to view the differences between
observations related to terminal dehydration between
beginning and experienced hospice nurses. A t test is a
ba�ic parametric procedure used to test the significance of
32
differences between the means of two groups (Polit &
Hungler, 1987). Because the two groups were independent of
one another and of differing sizes, a t test for independent
samples was used.
CHAPTER 4
ANALYSIS OF DATA
Analysis of the study data includes a description of
the population sample based on the data collected in the
demographic section of the questionnaire and a report of the
results of the data collected in the second portion of the
questionnaire. This chapter concludes with a summary of the
analysis of the data.
Description Of the Sample
Questionnaires were sent to the hospice directors of
105 hospice agencies listed in the National Hospice
Directory for 1989-1990. A non-probability convenience
sample based on geography was used. All hospices listed in
Texas, Arkansas, Colorado and Kansas were included. Some
form of response was obtained from 78 different hospice ,1
agencies. This represents a total response rate of 73%. Of f
these responses, 17 of the hospice directors stated that no ,,
one in the hospice agency would be responding to the
questionnaire. Hospice directors were not requested to
identify why nurses would not be responding to the
questionnaire. The majority of directors in this group,
however, did identify that they had no nurses presently
employed who met the criteria for either beginning or
experienced nurses as defined in my cover letter. Of the
33
34
questionnaires received, 15 did not meet the criteria
identified for inclusion in either group of beginning or
experienced nurses and were not used in thedata analysis. A
total of 71 questionnaires were received which were used in
the study. Of these, 21 were included in the group of
beginning nurses, and 50 were included in the group of
experienced nurses.
The questionnaire included questions regarding a number
of demographic variables in an effort to describe the sample
population. - This data describes the total sample of both
beginning and experienced hospice nurse and is located in
Table 1.
Respondents were also asked whether they felt they had
adequate preparation to care for hospice patients with
terminal dehydration. Of those answering this question,
92.9% stated yes and 7.1% stated no. Respondents were
also asked to identify the sources from which they obtained
their knowledge of terminal dehydration. The responses
received are included in Table 2 which demonstrates the
percentage of respondents who identified that category as a
knowledge source for their understanding of terminal
dehydration.
Table 1
Demographic Variables of Respondents
Variable Percentage of Respondents
Basic nursing preparation
associate degree
diploma
baccalaureate degree
Highest level of education
associate degree
31.0
31.0
38.0
22.5
diploma 22.5
baccalaureate degree 38.0
nurse practitioner 2�8
clinical nurse specialist 2.8
masters degree 11.3
Years of non-hospice nursing experience
less that 1 2.8
1-5 31.0
6-10
11-20
over 20
Type of hospice setting employed in
inpatient
outpatient
both
19.7
26.8
19.7
9.6
85.9
2.7
35
Table 2
Sources of Knowledge Identified by Respondents
Source of Knowledge Percentage of Respondents
Basic nursing preparation
Advanced degree
Hospice orientation
Hospice clinical experience
Independent study
Hospice workshops seminars, etc.
Other
46.5
1.4
62.0
87.3
64.8
59.2
5.6
36
Other sources of knowledge identified by respondents
included ONS Congress, hospice medical directors and other
hospice staff, families of hospice clients, and non-hospice
clinical nursing experience.
Findings
Findings are discussed in regard to the null
hypothesis. The null hypothesis is: There is no
significant difference in the observations of terminal
dehydration between beginning hospice nurses and experienced
hospice nurses. A t test for independent samples revealed
that experienced hospice nurses identified significantly
more positive observations related to terminal dehydration
37
than beginning hospice nurses (t= -2.37, df=69, p < .02).
Therefore, the null hypothesis· is rejected and the research
hypothesis supported.
In addition, respondents were asked to make any other
comments they wished. No beginning hospice nurses made
additional comments regarding terminal dehydration. over
half (27) of the experienced nurses made comments related to
terminal dehydration. These comments generally expressed
their observations and opinions that the process of terminal
dehydration is not only not harmful, but generally
beneficial for the dying person.
Summary of Findings
statistical analysis of the data of this study resulted
in rejection of the null hypothesis. The significance level
was p <.02. The research hypothesis was accepted,
demonstrating that experienced hospice nurses identified
more positive observations of terminal dehydration than did
beginning hospice nurses on a written questionnaire.
CHAPTER 5
SUMMARY OF THE STUDY
This study considered the question of whether there is
a difference in the observations of the state of terminal
dehydration in hospice clients between beginning and
experienced hospice nurses. A review of the literature
suggested that the state of terminal dehydration in the
final stages of life may be a positive adaptive response
within the physiologic mode when the client is viewed as an
adaptive system as described by Roy (1980). The research
hypothesis was based on the knowledge that increased
experience in the care of hospice clients would alter
nurses' experiential knowledge. It was hypothesized that
experienced hospice nurses would identify more positive
observations of the state of terminal dehydration in hospice
clients than beginning hospice nurses.
Summary
The design of this study was a non-experimental
comparative design. Questionnaires were mailed to hospice
agencies based on non-probability convenience sampling.
Responses were coded into groups of beginning or experienced
hospice nurses based on pre-determined criteria of length
of time employed in the direct care of hospice clients and
the number of clients observed who had experienced terminal
38
39
dehydration. The respondents completed a questionnaire
containing ten statements related to terminal dehydration in
hospice clients. The instructions given to the participants
were to circle a number on a four point Likert scale which
most closely reflected their own observations.
Statistical analysis was performed on the responses of
the two groups of nurses. A t test for independent samples
revealed support for the research hypothesis with a
significance level of p < .02.
Discussion of the Findings
The findings of this study suggest that as hospice
nurses gain experience in the care of patients experiencing
terminal dehydration they identify more positive
observations of this state. These findings are consistent
with those of other hospice clinicians and researchers.
This study supports the original work of Andrews and
Levine (1989) who studied the perceptions of hospice nurses
related to dehydration in terminally ill hospice patients.
They found that "hospice nurses who are experienced in the
matter of terminal dehydration view it as beneficial in the
imminently terminal stages of life" (p. 34). Miller and
Albright (1989) also studied perceptions of hospice nurses
related to nutrition and hydration and found that 77% of the
hospice nurses perceived that patients experiencing
dehydration prior to death "don't suffer much" (p. 34).
40
Reports by a number of clinicians (Zerwekh, 1983,
Dolan, 1983, Saunders and Baines, 1983, Schmitz and O'Brien,
1986, Musgrave, 1990, Billings, 1985, and Brown and Chekryn,
1989) also concur with the understanding that dehydration in
the terminal patient may in fact be an adaptive process
which affords a decrease in noxious symptoms for some dying
patients.
Conclusions and Implications
Although this study is limited in its scope and
generalizability, it may provide useful data for health care
professionals seeking to present alternative care options to
the patient and family. The recognition that the process of
dehydration prior to the death of a terminally ill
individual may be beneficial allows the health care provider
to consider more than the traditional, automatic use of
intravenous therapies as spontaneous oral intake ceases.
Viewed from the context of Roy's Adaptation Model,
dehydration prior to death in the terminally ill may be
considered as a coping response to the stimulus of the
actual disease process such as tumor growth. The nurse has
the option to manipulate related contextual stimuli, such as
the patient and family's knowledge base related to the
benefits/drawbacks of the use of IV therapies. The data
from this study may enhance our abilities to share relevant
information with the patient and family as they try to cope
41
with emotion-laden decisions during a time of crisis.
Experienced nurses who made additional comments on the
questionnaire stated that the nurse must be aware of his/her
own feelings and knowledge of care of the dying before it is
possible to help others during this time. They also
stressed the importance of providing accurate, appropriate
information to the family, because the pain of any terminal
process lies predominantly with the family and loved ones.
Beginning hospice nurses, and other practitioners
dealing with the care of the dying need to share in the
experiential knowledge of more experienced nurses. This
knowledge should be tagut to beginning practitioners to
enhance their ability to provide effective, appropriate
care.
Recommendations for Further study
Further study needs of be done with different sample
populations, including not only hospice nurses in other
geographic areas, but also of nurses in non-hospice settings
who have experience in the care of the terminally ill and
dying. studies of the observations of other health care
providers would lend a different perspective and broaden the
knowledge base in this field. Finally, data from the
observations of family and directly from the persons
experiencing dehydration would greatly add to our
understanding of this experience.
REFERENCES
Andrews, M.R. & Levine, A.M. (1989). Dehydration in the terminal patient: Perception of hospice nurses. The American Journal of Hospice Care i(l). 31-34.
Billings, J.A. (1985). Comfort measures for the terminally ill: Is dehydration painful? Journal of the American Geriatrics Society 21(11). 808-810.
Brown, P. & Chekryn, J. (1989). The dying patient and dehydration. The Canadian Nurse 85(5). 14-16.
Callahan, D. (1986). Public policy and the cessation of nutrition. In J. L. Lynn (Ed.), By no extraordinary means: The choice to forgo life-sustaining food and water (61-66). Bloomington: Indiana University Press.
Corcoran, s. (1986). Expert and novice nurses' use of knowledge to plan for pain control. The American Journal of Hospice Care d(6). 37-41.
Dolan, M. (1983). Another hospice nurse says. Nursing 83 13(1). 51.
Knox, L. (1989). Ethical issues in nutritional support · nursing: Withholding and withdrawing nutritional support. Nursing Clinics of North America 24(2), 427-436.
Kukura, J. & Anderson, G. (1987). Withdrawing or withholding treatment. In G. R. Anderson & v. A. Glesnes-Anderson (Eds.), Health care ethics (138-151). Rockville, MD: Aspen Publishers.
Levinsky, N. G. (1977). Fluids and electrolytes. In G. w.
Thorn, R. D. Adams, E. Braunwald, K. J. Isselbacher, & R. ·G. Petersdorf (Eds.), Harrison's principles of internalmedicine: Eighth edition (366-375). New York: McGrawHill.
Lynn, J. (1986). Introduction and overview. In Lynn, J. (Ed.) By no extraordinary means: The choice to forgo life-sustaining food and water (1-10). Bloomington: Indiana University Press.
42
43
Lynn, J. & Childress, J. (1986). Must all patients always be given food and water? In Lynn,J. (ed.) By no extraordinary means: The choice to forgo life-sustaining food and water (47-60). Bloomington: Indiana University Press.
Micetich, K., Steineckor, P. & Thomasma, D. (1986). An Empirical study of physicians' attitudes. In J. L. Lynn (Ed.), By no extraordinary means: The choice to forgo life-sustaining food and water (39-46). Bloomington: Indiana University Press.
Miller, R. & Albright, P. (1989). What is the role of nutritional support and hydration in terminal cancer patients? The American Journal of Hospice Care Q(6), 33-38.
Musgrave, C. F. (1990). Terminal dehydration: To give or not to give intravenous fluids? Cancer Nursing 13 (1), 62-66.
Nieswadomy, R. (1987). Foundations of nursing research. Norwalk: Appleton-Lange.
Oliver, D (1984). Terminal dehydration. The Lancet (2), 631.
Polit, D. & Hungler, B. (1987). Nursing research principles and methods (3rd ed.). Philadelphia: J. B. Lippincott.
Ramsey, P. (1977). On (only) Caring for the dying. In R. F. Weir (Ed.), Ethical issues in death and dying (189-225). New York: Columbia University Press.
Roy, Sr. C. (1980). The Roy Adaptation Model. In Riehl, J. P. & Roy, Sr. c. Conceptual models for nursing practice. (2nd ed.) (178-206). Norwalk: Appleton-Century-Crofts.
Saunders, c. & Baines , M. (1983). management of terminal disease. University Press.
Living with dying the Oxford: Oxford
Schmitz, P. & O'Brien, M. (1986). Observations on nutrition and hydration in dying cancer patients. In J. L. Lynn (Ed.), By no extraordinary means: The choice to forgo life-sustaining food and water (29-38). Bloomington: Indiana University Press.
44
Siegler, M. & Shiedmayer, D. (1987). Should fluid and nutritional support be withheld from terminally ill patients? The American Journal of Hospice Care �(2), 32-35.
Skapura, P. & Bohnet, N. (1982). Primary caregivers' perceptions of nursing behaviors that best meet their needs in a home care hospice setting. Cancer Nursing a(5), 311-344.
Wanzer, s., Federman, D., Adelstein, s., Cassel, c.,Cassem, E., Cranford, R., Hook, E., Lo, B., Moertel, c., Safar, P., Stone, A. & Van Eys, J. (1989). The physician's responsibility toward hopelessly ill patients: A second look. The New England Journal of Medicine 320 (13), 844-849.
Zerwekh, J. (1983). The dehydration question. Nursing 83 13(1), 47-51.
Zerwekh, J. (1984a). The last few days. In A. Blues & J.
Zerwekh (Eds.), Hospice and palliative nursing care (177-197). Orlando, FL: Grune & Stratton.
Zerwekh, J. (1984b). Understanding the patient experience. In A. Blues & J. Zerwekh (Eds.), Hospice and palliative nursing care (29-43). Orlando, FL: Grune & Stratton.
APPENDIX A
LETTERS OF PERMISSION
45
Maria R. Andrews, M.S. R.D. Department of Human Ecology Marywood College Scranton, Pa.
Dear Ms. Andrews,
46
February 8, 1990
I am a graduate nursing student at Texas Woman's University in Denton, Texas. Pursuant to completion of my degree requirements, I am developing a research project in the area of terminal dehydration in hospice clients. I was very interested in your work in this area, as reported in the January, 1989 issue of The American Journal of Hospice Care.
I would like your permission to replicate the questionnaire regarding hospice nurses' perceptions of the state of terminal dehydration. I would also greatly appreciate any information you have regarding the validity and reliability of the instrument you developed, as well as any other information on this subject that you would care to share with me.
If you are willing to allow me to use your questionnaire, I will also need a statement giving me permission to publish a sample of the questionnaire in the appendix of my thesis.
I look forward to hearing from you and appreciate your time and assistance.
Sincerely,
Jean M. Flick, R.N. Box 77 Tom Bean, TX 75489 (214) 546-6761
Ms. Jean M. F 1 i ck, R. N. Box 77 Tom Beam, Texas 75489
Dear Ms. Flick:
Maria Andrews, M.S., R.D. 18 Briar Creek Road Plains, ,PA:118702
February 21, 1990
Thank you for your interest In our study, 11Dehydration in the Terminal Patient: Hospice Nurses' Perception." Dr. Levine forwarded your letter to me. I completed this research in order to fulfill the requirements for a Master of Science degree. I am honored to permit you to replicate the questionnaire for your research project. As you know, only Hospice Nurses who represented programs in Pennsylvania and New Jersey were surveyed. I would be interested to learn if similar results are found when Hospice Nurses of other states are questioned. You may use the questionnaire and publish it in the appendix of your thesis. However, in the event that your work is published in professional 1 lterature, please do not publish the questionnaire. In addition, forward to me any further requests to replicate it.
I have no validity or reliability data. However, the questionnaire was tested by all Nursing staff of the Palliative Treatment Unit (Hospice) of the VA Medical Center in Wilkes-Barre, Pennsylvania. Their comments were considered in preparing the final form. Because of some of the responses to question 2 in Section 1, I suspect this statement has to be written more clearly. Instead of the words, "this state", you may consider using, "without food or fluid for at least 3 days prior to death." Additionally some of the participants wrote that question 8 of Section 11 is too confusing. Perhaps this statement should be omitted or reworded.
would be happy to discuss this study with you and help you further if needed. Please send me a copy of your thesis. Best of luck in your endeavor.
Sincerely,
f!it1-u� or.dw,<11 J,r/ /Jr MARIA ANDREWS, M.S., R.D.
Enclosure
48
L
Ms. Jean Flick Box 77 Tom Bean, TX 75489
Dear Ms. Flick:
TEXAS WOMAN'S UNIVERSITY DENTON DALLAS HOUSTON
THE GRADUATE SCHOOL P.O. Box 22479, Denton, Texas 76204 817/898-3400, 800-338-5255
June 27, 1990
49
Thank you for providing the materials necessary for the final approval of your prospectus in the Graduate Office. I am pleased to approve the prospectus, and I look forward to seeing the results of your study.
dl
If I can be of further assistance, please let me know.
Sincerely yours,
�J:!,o� Dean for Graduate Studies
and Research
cc Ms. Charlotte Patrick Dr. Helen Bush
APPENDIX B
COVER LETTERS
50
Dear Hospice Director,
I am a student in the graduate nursing program at Texas Woman's University in Denton, Texas. Prerequisite to completion of my degree work, I am currently working on a research investigation related to terminal dehydration in hospice clients.
51
The purpose of my study is to consider the possible differences between the observations identified by experienced and beginning hospice nurses related to the state of terminal dehydration in hospice clients. The study consists of a questionnaire to be completed by two groups of hospice staff R.N.s:
1) those staff R.N.s who have provided direct patientcare to hospice clients for at least one year and have cared for at least ten hospice clients who did not receive food or fluid for the three days preceding death
2) those staff R.N.s who have provided direct patientcare to hospice clients for six months or less and have provided care for five or fewer clients who did not receive food or fluids for the three days prior to death.
Participation involves distribution of the enclosed questionnaires to one hospice staff R.N. who meets each of the guidelines listed above. By participating in this study, your staff may contribute to our understanding of the experience of terminal dehydration in hospice clients.
Participation in this study is voluntary. Any person may refuse to participate or may withdraw from the study at any time without penalty. No names of individuals or agencies should be placed on the questionnaires. All responses shall be kept confidential with no identification of respondents or agencies in the research report. A code number appears on each questionnaire only for the purposes of data collection and tabulation. A summary of the research results will be available upon request. Questionnaires should be returned by JULY 31, 1990. Please contact me at the address or phone number below for any further questions or concerns. Thank you very much.
Sincerely,
Jean M. Flick, R.N. Box 77 Tom Bean, TX (214) 546-6761
PLEASE COMPLETE THIS FORM BY CHECKING ALL APPROPRIATE
STATEMENTS AND RETURN IN THE ENCLOSED ENVELOPE;
A questionnaire was given to an experienced nurse meeting the criteria defined previously.
A questionnaire was given to a beginning nurse meeting the criteria defined previously.
No ques·�ionnaires were distributed.
52
53
Dear Hospice Colleague,
I am a M.S. nursing student in the graduate program at Texas Woman's University in Denton, Texas. I am writing to ask for your participation in a study I am conducting in partial fulfillment of my degree requirements. The purpose of this research is to study the observations of beginning and experienced hospice nurses regarding the state of terminal dehydration in hospice clients.
For this study, I have identified beginning hospice nurses as those who have provided direct patient care to hospice clients for six months or less and cared for five or fewer patients with terminal dehydration (no food or fluids for at least three days prior to death); and experienced nurses as those who have provided direct patient care for at least one year and cared for at least ten patients with terminal dehydration. If your experience does not fit into either category, please return this questionnaire to your director.
Your participation may add information to our knowledge about the experience of terminal dehydration which may enhance the provision of hospice care to dying patients and their families.
Participation consists of the completion of a two part questionnaire and should take about 5-10 minutes of your time. Your participation is voluntary; you may refuse to participate or may withdraw your participation at any time without penalty.
Please do not list your name or the name of your agency on the questionnaire. A code number is listed on the top of each questionnaire which will be used only for identification of hospice agencies for the purpose of compiling data. After completing the questionnaire please place it in the envelope provided, seal it, and return to me by JULY 31, 1990. All responses will be kept confidential. My research report will not identify by name any respondents or agencies participating in this study. If you have any questions regarding this study, please contact me at the address or phone number listed below. Thank you very much.
Jean M. Flick, R.N. Box 77 Tom Bean, TX (214) 546-6761
APPENDIX C
INSTRUMENT
54
RETURN OF THIS QUESTIONNAIRE WILL BE CONSIDERED TO BE YOUR CONSENT TO BE A RESEARCH SUBJECT IN THIS STUDY
Please respond to all questions.
SECTION I
1. Circle your basic nursing preparation:
a. associate degree b. diploma c. baccaulaureate
2. Circle the highest level of education completed:
a. Associateb. Diplomac. Baccaulaureated. Nurse Practionere. Clinical Nurse Specialistf. Mastersg. Doctoral
3. Circle the number of years of nursing experience in anon-hospice setting:
a. less than oneb. 1-5 yearsc. 6-10 year:;d. 11-20 yearse. more than 20 years
4. Circle the length of time you have provided directpatient care to hospice clients:
a. 6 months or lessb. 1 year or more
55
. 5. In your hospice experience, approximately how many times have you observed a patient to whom no food or fluid was given or taken for at least 3 days before death? (Circle one):
a. 5 or lessb. 10 or more
(Please turn the page over)
6. Circle the type of hospice in which you are employed:
a. inpatientb. outpatient
7. Do you feel adequately prepared to care for hospicepatients with terminal dehydration? (Circle one)
a. yesb. no
8. From what source(s) did you obtain your knowledge ofterminal dehydration? (May circle more than one)
a. basic nursing preparationb. advanced degree or certificationc. hospice orientationd. hospice clinical experiencee. independent study (books, journals)f. hospice workshops, seminars, inservice classesg. other: (please list)
56
57
THE EFFECTS OF DEHYDRATION IN THE TERMINAL PATIENT
Section 2: Please consider the terminal patient whose death is imminent in responding to these statements about dehydration. Terminal dehydration is defined as no food or fluids for at least the three days prior to death. READ EACH STATEMENT CAREFULLY and circle the number which most closely reflects your observations--those observations you have made in your care of dying persons, not the opinions or expectations of others.
Please respond to all statements.
1. As fluid intake is reduced there is a reduction in thebouts of vomiting.
4 Almost Always
3
Frequently 2
Seldom
2. Dehydration causes apathy and depression.
4
Almost Always
3 Frequently
2
Seldom
1 Almost Never
1
Almost Never
3. Dying patients who are dehydrated feel thirsty.
4 3 2 1 Almost Frequently Seldom Almost Always Never
4. There is a relief from choking and drowning sensationswhen fluids are discontinued.
4 3 2 1 Almost Frequently Seldom Almost Always Never
5. Dehydration is painful.
4 3 2 1 Almost Frequently Seldom Almost Always Never
(Please turn the page over)
6. Dry mouth caused by lack of fluid intake necessitatesthe use of IV's and/or tube feeding.
4 Almost Always
3 Frequently
2 Seldom
1 Almost Never
7. Coughing and pulmonary congestion are decreased withdehydration.
4 3 2 1 Almost Frequently Seldom Almost Always Never
58
8. Tracheal and nasogastric suctioning are unnecessary forpatients
4 Almost Always
who are dehydrated.
3 Frequently
2 Seldom
1 Almost Never
9. Patients who are dehydrated experience relief fromdistressing symptoms.
4 Almost Always
3 Frequently
2 Seldom
1 Almost Never
10. Dehydration can be beneficial for the dying patient.
4 Almost Always
3 Frequently
2 Seldom
1 Almost Never
Other comments you may wish to share about terminal dehydration: