Journal of Gerontological Nursing

DEHYDRATION IN TERMINALLY ILL PATIENTS: Perceptions of Long-Term Care Nurses

Jennifer Critchlow, MS, RNCS, ANP; Susan M Bauer-Wu, DNSc, RN

Abstract

ABSTRACT

Dehydration m terminally ill patients has been found to be beneficial and to improve the quality of an individual's last few days of life. As the population continues to age, more individuals are cared for in long-term care (LTC) facilities, where they tend to spend their final days. Previous studies have examined the perceptions and attitudes of hospice nurses, acute care nurses, physicians, and caregivers; however, no such studies have evaluated LTC nurses. It is necessary to know LTC nurses' perceptions and attitudes so they can be offered the eäucation needed to provide the best quality care for terminally ill patients. The purpose of this study was to describe how nurses working with elderly individuals in LTC perceived terminal dehydration (TD). Long-term care nurses (N = 64) were surveyed using a modified version of an established 10-item instrument. Significant findings included a positive correlation between age and positive perception of TD - as nurse age increased, a more positive view of TD was expressed. Also, the number of deaths witnessed was positively associated with the belief that TD was beneficial. In general, responses to the individual survey items were quite varied, representing inconsistencies in attitudes and care of dying LTC patients. The results of this descriptive study indicate the debate concerning the benefits of TD continues and remains an important topic for the LTC nurse.

Abstract

ABSTRACT

Dehydration m terminally ill patients has been found to be beneficial and to improve the quality of an individual's last few days of life. As the population continues to age, more individuals are cared for in long-term care (LTC) facilities, where they tend to spend their final days. Previous studies have examined the perceptions and attitudes of hospice nurses, acute care nurses, physicians, and caregivers; however, no such studies have evaluated LTC nurses. It is necessary to know LTC nurses' perceptions and attitudes so they can be offered the eäucation needed to provide the best quality care for terminally ill patients. The purpose of this study was to describe how nurses working with elderly individuals in LTC perceived terminal dehydration (TD). Long-term care nurses (N = 64) were surveyed using a modified version of an established 10-item instrument. Significant findings included a positive correlation between age and positive perception of TD - as nurse age increased, a more positive view of TD was expressed. Also, the number of deaths witnessed was positively associated with the belief that TD was beneficial. In general, responses to the individual survey items were quite varied, representing inconsistencies in attitudes and care of dying LTC patients. The results of this descriptive study indicate the debate concerning the benefits of TD continues and remains an important topic for the LTC nurse.

Terminal dehydration (TD) occurs during the last few days of life as patients gradually begin to decrease fluid intake (Billings, 1985; Zerwekh, 1997). For the purpose of this article, this period will be described as the last 7 to 14 days of life. This decrease in fluid intake prevents the patient from maintaining a state of hydration (Bürge, 1993). Signs of TD include dry mucous membranes, dry skin, and postural hypotension, decreased secretions, decreased urine production, and hypoxia secondary to decreased circulatory volume (Bürge, 1 1993; Sullivan, 1993). However, the ^ most disturbing side effects are dry mouth and thirst, which are relieved with meticulous mouth care and fluids, as the patient desires (Billings, 1985; Zerwekh, 1997).

Terminal dehydration came to the forefront of the health care field in the early 1980s. Zerwekh (1983) and Billings (1985) initiated the discussion of whether or not TD was harmful to patients. The debate continues despite evidence that the benefits of TD outweigh the drawbacks. Many of the drawbacks, which would be of consequence in healthy dehydrated individuals, have very little impact on dying individuals (Andrews, Bell, Smith, Tischler, & Veglia, 1993; Billings, 1985; Printz, 1988; Rousseau, 1992). The benefits of TD can effect the quality of the individual's last days more significantly than the drawbacks (Collaud & Rapin, 1991; McCann, Hall, & Groth-Juncker, 1994; Vullo-Navich et al., 1998; Zerwekh, 1983, 1997). It is clear, however, that TD and the use of artificial nutrition and hydration (ANH) continue to be controversial issues for patients of different ages and in clinical settings (Fainsinger & Bruera, 1997; GaranisPapadatos & Katsas, 1999; Huang & Ahronheim, 2000; Tobin, 2000; Welk, 1999; White & Hall, 1999).

Nurses', physicians', and family caregivers' perceptions of TD in the literature have been examined. Hospice nurses have been the focus of the most research because of their experience with terminally ill patients. These nurses tend to have a more positive perception of TD. Their extensive experience with dying patients has afforded them the opportunity to view this process and witness the benefits. The more deaths a person had witnessed, the more positive their attitude toward TD (Andrews & Levine, 1989; Miller & Albright, 1989). Acute care nurses tended to have the opposite reaction and felt patients needed ANH (House, 1992).

Physicians have expressed reluctance to discontinue ANH, because they believe the patient would be uncomfortable and because they feel they would be abandoning the patient. Family caregivers were more likely to internalize their unsettled feelings related to their family member stopping eating and drinking. Food represented love, care, hope, and life to these caregivers - after food and drink were no longer accepted by the patient, the family members felt hopeless and had to face that the patient would probably not get better (Meares, 1997).

The health care field is rapidly changing, and admissions and acuity of patient care in LTC facilities is rising (Goff ell, 1997). Furthermore, more and more deaths are occuring in LTC settings. Currently, most LTC facilities have the capability to insert and implement IVs for use in hydration or medication. The dilemma of whether to hydrate or to allow TD to take its course will increasingly become an issue in LTC nursing practice. With extensive years of experience in LTC, the authors have noticed three issues:

* Many nursing homes have not addressed TD versus hydration.

* Standards of practice and guidelines have not been developed concerning TD.

* Many LTC nurses, both registered nurses (RNs) and licensed practical nurses (LPNs), are unaware of the option or benefits of TD.

Figure 1. Ruland and Moore's theory of the peaceful end of fife (1998, p. 174; used with permission from Mosby, inc.). The five outcome criteria are in the upper boxes, with interventions listed below.

Figure 1. Ruland and Moore's theory of the peaceful end of fife (1998, p. 174; used with permission from Mosby, inc.). The five outcome criteria are in the upper boxes, with interventions listed below.

The LTC nurse often interacts with terminally ill patients and their families. No studies about these nurses' perceptions of TD have been found in the literature. Before guidelines can be established and effective changes in attitudes and learning about dehydration in the terminally ill can occur, the perceptions of these nurses must be understood. Therefore, the purpose of this study was to describe how nurses working with elderly individuals in the LTC setting perceive TD.

THEORETICAL FRAMEWORK

Ruland and Moore (1998) have proposed a theory of the peaceful end of life (Figure 1). The first two outcomes of this theory are the patient does not experience pain and the patient will experience comfort. These outcomes are especially relevant to the discussion of dehydration in the terminally ill. The criteria for these outcomes are that the patient:

* Has no pain.

* Does not experience nausea.

* Does not experience thirst.

* Experiences optimal comfort.

Identifying perceptions of the LTC nurse will foster therapeutic interventions consistent with the patient's peaceful end of life.

REVIEW OF THE LITERATURE

Benefits and Drawbacks of Terminal Dehydration

Both benefits and drawbacks of TD have been described in the literature; however, it appears the benefits outweigh the drawbacks. As the terminally ill patient becomes dehydrated, many bodily fluids decrease, reducing:

* Urine output.

* Gastrointestinal secretions.

* Pulmonary and pharyngeal secretions.

* Edema.

The resulting benefits include reduction in need to void, fewer episodes of nausea and vomiting, less coughing and congestion, reduced sensations of pressure in the periphery and pulmonary system, and less sensation of drowning and choking.

Study results show terminally ill patients in the state of TD experience less discomfort than patients receiving intravenous (IV) therapy (Andrews et al., 1993; Andrews & Levine, 1989; Billings, 1985; McCann et al., 1994; Miller & Albright, 1989; Smith, 1995, 1997; Sullivan, 1993; Zerwekh, 1983, 1997). The reasons for this comfort have not been empirically validated, but theories have been proposed.

Printz (1988, 1992) presented the idea that physiological imbalances cause analgesia through acidosis, hypernatremia, hypercalcemia, and cerebral anoxia. As calorie deprivation occurs, ketone production increases, causing partial loss of sensation. Some ketones have an anesthetic effect. Rousseau (1991) questioned whether the increase in the ketone beta-hydroxybutyrate was converted to gamma-hydroxybutyrate in the brain - a product known to have an anesthetic effect. Food deprivation in rats has been shown to cause an increase in beta-endorphin, a natural opiate, in the hypothalamus and plasma; while water deprivation has caused an increase in dynorphin, an extremely strong opiate. Researchers speculate humans may produce a similar opioid compound that is able to cause some analgesia (Andrews et al., 1993; Printz, 1988; Zerwekh, 1983). Therefore, TD is associated with a more comfortable experience for the dying individual.

Table

TABLE 1SAMPLE CHARACTERISTICS

TABLE 1

SAMPLE CHARACTERISTICS

Disadvantages of TD can include (Billings, 1985; Printz, 1988; Zerwekh, 1983):

* Apathy.

* Lethargy.

* Coma.

* Confusion.

* Falls.

* Increased risk for pulmonary embolism.

* Deep vein thrombosis.

* Headaches.

* Nausea and vomiting.

* Muscle cramps.

* Increased risk for urinary tract infections.

* Dysuria.

* Dry mouth.

* Thirst.

However, researchers have found it difficult to tell if these disadvantages have a great effect on the dying patient (Billings, 1985; Printz, 1988; Rousseau, 1992).

Consequences of Hydration

When rVs are started on patients already in a state of TD, some adverse effects occur. If ketonemia is reversed, the potential for the return of discomfort increases. Small amounts of carbohydrates, such as IV mixtures of 5% dextrose and water, can block ketone production, reducing the anesthetic effect and restoring hunger (Sullivan, 1993). Andrews et al. (1993) noted patients allowed food or fluid as they desired were the most comfortable during the dying process. Artificial nutrition and hydration only caused discomfort in these patients nearing death. Complications from fluid administration, whether adequate to sustain life or not, included (Andrews et al., 1993; Billings, 1985; Bürge, 1993; Zerwekh, 1983):

* Increased pain.

* Painful peritumor edema.

* Peripheral edema.

* Increased respiratory congestion and secretions.

* Diarrhea.

* Congestive heart failure.

* Nausea.

* Vomiting.

Smith (1995) has suggested there is no evidence ANH prolongs the life of the terminally ill patient, and cites several studies indicating the survival times of patients who did not receive ANH were actually longer. In a review article, Fainsinger and Bruera (1997) concluded most terminally ill patients will not suffer from dehydration. However, those who experience symptoms such as confusion or opioid toxicity may benefit from parenteral hydration.

Perceptions of Nurses and Caregivers

The benefits of dehydration and health care professionals' lack of knowledge on this topic have been well documented (Andrews & Levine, 1989; Brant, 1998; Bürge, 1993; Byock, 1995; Fainsinger et al., 1994; House, 1992). It appears a range of attitudes and practices exists among different care providers of the terminally ill. Andrews and Levine studied the perceptions of experienced versus inexperienced hospice nurses. In their study, 82% of the surveyed nurses indicated TD was not painful.

Andrews and Levine also discovered experienced nurses who had witnessed the dehydration process had significantly more positive perceptions of TD than nurses who had not. Miller and Albright (1989) surveyed hospice nurses about the importance of nutrition and dehydration. The nurses surveyed believed poor appetite was the most common reason patients did not eat, and aggressive nutritional support would do more harm than good.

Nurses working in hospitals, a more acute care setting, had a more negative perception of TD than hospice nurses did (House, 1992). Acute care nurses believed TD caused a range of unpleasant symptoms. This negative perception may be due, in part, to the greater use of IVs at the time of death in the hospital setting.

Smith (1997) noted IVs are routinely used in acute care hospitals. Bürge, King, and Willison (1990) conducted a retrospective study of a medical center in Canada and found 81% of the patients had an IV inserted in the last month of their lives, and 69% of these patients had an IV line in place at the time of death. The perceptions of non-specialized nurses, acute care nurses, and hospice nurses appeared to depend on their experiences with TD (Andrews & Levine, 1989; House, 1992; Sutcliffe & Holmes, 1994).

Meares (1997) examined the perceptions of primary caregivers in the home hospice setting in relation to the cessation of eating and drinking. Caregivers' emotions ranged from mild anxiety to agony. They stated they were not aware intake cessation often occurs in terminally ill patients and is part of the body "shutting down" in preparation for death.

Figure 2. Age versus total perception score. The older the nurse, the higher the score was likely to be. Higher scores reflected greater agreement with the overall concept that terminal dehydration is beneficial.

Figure 2. Age versus total perception score. The older the nurse, the higher the score was likely to be. Higher scores reflected greater agreement with the overall concept that terminal dehydration is beneficial.

Table

TABLE 2EXPERIENCE WITH TERMINAL DEHYDRATION AND DEATH

TABLE 2

EXPERIENCE WITH TERMINAL DEHYDRATION AND DEATH

They thought this information would have been helpful before intake cessation occurred - not after the patient had ceased eating and drinking or died. Morita et al. (1999) studied terminally ill cancer patients and their family members' perceptions and decision-making related to artificial fluid therapy. Many participants (56% patients and 84% family members) believed withholding fluid therapy would cause premature death, while more than half of all participants felt forced rehydration might worsen suffering (Morita, Tsunoda, Inoue, & Chihara, 1999).

METHODS

A convenience sample of LPNs and RNs (N = 64) was recruited from two LTC facilities in central Massachusetts. The LTC facilities were licensed for 123 and 139 beds. One of the facilities had a Special Care Unit for Alzheimer's patients, and both had sub-acute units. The only requirement for participation was current employment in one of these LTC facilities.

Procedure

In each facility, the principal investigator met with the nursing director and the shift supervisors to explain the study and questionnaire. Nurses present at the time of this initial meeting completed the questionnaire. Surveys were left on each nursing unit for two weeks for staff who worked other shifts or days.

Each survey had an introductory letter explaining the purpose of and how to complete the survey. Completed surveys were returned at the nurses' convenience to a box placed at the nurses' station. Sixtyfour surveys were returned from the total staff of 85 during the 2 -week time period, for a 75% return rate.

Figure 3. Frequency of LTC nurses' responses for individual item: Dehydration provides relief from distressing symptoms.

Figure 3. Frequency of LTC nurses' responses for individual item: Dehydration provides relief from distressing symptoms.

Instrument

The survey instrument was a modified version of a 10-item questionnaire initially developed to determine the TD perceptions of hospice nurses (Andrews & Levine, 1989). The survey consisted of a five-point Likert scale, ranging from strongly agree to strongly disagree, to measure the LTC nurse's opinion concerning TD. Higher scores indicated more favorable perceptions of TD, with 50 being the highest possible score.

Content validity had been previously established using a group of expert palliative care nurses (Garnes, 1992). For this study, two LTC nurses reviewed the questionnaire prior to beginning the study. One question was identified as difficult to understand: "Patients who are dehydrated experience relief from distressing symptoms." This question was revised to read: "Dehydration provides relief from distressing Symptoms." Internal consistency reliability using Cronbach's alpha coefficient was 0.92 for this study, compared to 0.84 in Games' (1992) study.

Figure 4. Frequency of LTC nurses' responses for individuai item: Dehydration can be beneficial to the dying patient.

Figure 4. Frequency of LTC nurses' responses for individuai item: Dehydration can be beneficial to the dying patient.

Sample

The study sample consisted of generally older (M = 46 years, SD = 11), non-professional (46% LPNs and RNs with associate's degrees or diplomas), White nurses with extensive LTC experience (Table 1). Ninety-one percent (n = 58) of these nurses had witnessed the deaths of more than five patients experiencing TD. Eighty-three percent (n = 53) had been present during the last week of a friend or family member's life (Table 2).

Data Analysis

Descriptive analysis relating to characteristics of the study sample was conducted and overall perception scores were calculated. Relationships between socio-demographic variables and overall perception scores, and between sociodemographic variables and individual items were identified using Pearson product-moment correlations, and one way analysis of variance (ANOVA). Scatter plots were examined and relationships were linear.

RESULTS

Age of LTC nurses was significantly associated with a positive perception of TD. As illustrated in Figure 2, a positive correlation existed between age and TD perception score (r = .25, ? = .047), and the individual item, "Terminal dehydration is not painful," (r = .36, ? = .004). In addition, the number of deaths witnessed by LTC nurses was significantly correlated with their belief that TD is beneficial (r = .27, ? = .042). No other significant relationships among variables were identified.

Responses for the individual items were widely dispersed across the agree-disagree continuum, with no clear trend. Figures 3 and 4 illustrate this distribution for "Dehydration provides relief from distressing symptoms," and "Dehydration can be beneficial to the dying patient." Such uniform response distribution was not identified in "Dry mouth caused by a lack of fluid intake does not necessitate the use of IVs or tube feedings" (more than 60% agreed or strongly agreed); and "Tracheal and nasogastric suctioning are unnecessary for patients who are not given IV fluids" (more than 70% disagreed or strongly disagreed).

The responses of RNs versus LPNs were examined. Twice as many RNs as LPNs strongly agreed with the statement "Dehydration is not painful," and almost twice as many LPNs as RNs strongly disagreed. Both LPNs and RNs generally agreed with the statement "Dehydration provides relief from distressing symptoms." However, RNs were more than twice as likely to strongly agree and LPNs were three times as likely to agree somewhat. Both groups disagreed or strongly disagreed with that statement to a similar degree.

Responses to "Dehydration can be beneficial to the dying patient" were spread evenly across the continuum. As noted previously, the percentage of RNs who strongly agreed was greater than the percentage of LPNs, and the percentage of LPNs who somewhat agreed was greater than the percentage of RNs. Both RNs and LPNs agreed "Dry mouth caused by lack of fluid intake does not necessitate the use of IVs or tube feeding," but 63% of the RNs strongly agreed versus 34% of the LPNs.

The RNs and LPNs were of similar opinion about "Coughing and pulmonary congestion are decreased with dehydration." They either agreed or strongly agreed. However, 38% of LPNs versus 22% of RNs somewhat disagreed with that statement. Examination of all responses revealed more RNs agreed or strongly agreed with statements about TD, and more LPNs somewhat or strongly disagreed.

Sixty-one percent of the participants had prior acute care experience. A trend toward an association between this experience and negative perception of TD was noted. Nine of the 10 survey items had a negative correlation between years of acute care experience and TD perception, although this finding was not statistically significant.

DISCUSSION

The attitudes of many health care workers are based on their professional and personal experiences rather than on current literature and scientific studies. These findings show the older the nurse and the greater the professional experience, the higher the total score, indicating a more positive perception of TD. This finding agrees with that of another study (Marin, Bayer, Tomlinson, & Pathy, 1989), which found older physicians were more conservative in their use of ANH. Health care providers need to explore and recognize their biases related to TD, and have an opportunity to learn about the benefits and drawbacks of TD.

The data reveal LPNs tend to believe the common myth that TD is painful, despite anecdotal observations and studies in the literature to the contrary. The results of the survey indicate a division and lack of agreement on the topic among RNs and LPNs in the LTC setting. This disagreement can cause conflict among LTC nurses who believe they have the best interests of the patient in mind.

A potential for conflict among RNs and LPNs was noted as RNs more strongly agreed dehydration can be beneficial and is not painful, and dry mouth caused by lack of fluid intake does not necessitate the use of IVs. Although dry mouth and thirst are the most common unpleasant symptoms of TD, the majority of nurses surveyed believed IVs were not necessary to relieve such symptoms, but RNs were much more likely to be in strong agreement. These same nurses, whether RN or LPN, did not agree that TD could be beneficial for terminally ill patients. This disagreement indicates both RNs and LPNs would profit from increased education about the benefits and drawbacks of TD and ANH.

A trend toward a correlation between acute care nursing experience and negative perception of TD was noted. This association might indicate acute care nurses believe TD has more drawbacks than benefits. These nurses may be more comfortable caring for an individual with an IV and believe IVs are necessary until death. A similar association was also noted in a study conducted by House (1992). This is not surprising considering acute care nurses take care of critically ill patients for whom IVs can be life saving. Bürge, King, and Willison (1990) noted 69% patients die with an IV in place in the hospital setting. Advocating for the benefits of TD may be difficult in such a clinical environment.

Ruland and Moore's theory of the peaceful end of life (1998), developed from the standard of care for a peaceful end of life in terminally ill patients, can be applied to the findings of this study. Of the five outcome criteria of this theory, three are applicable: not being in pain, experiencing comfort, and experiencing dignity and respect (Ruland & Moore, 1988). These guidelines are further supported by studies of nurses (Andrews & Levine, 1989; Miller & Albright, 1989).

The initial criterion of not being in pain can be aided with the state of TD, and ANH can interfere with the natural analgesic effects of TD (Collaud & Rapin, 1991; Zerwekh, 1997). Andrews and Levine found 82% of the nurses they studied believed TD was not painful. Miller and Albright found 77% of the hospice nurses in their study did not believe patients suffered from the lack of ANH. They also found 72% believed malnutrition was not painful, and 95% felt ANH would do more harm than good (Miller & Albright, 1989).

The second criterion for Ruland & Moore's theory of the peaceful end of life (1998), the experience of comfort, has been supported by many studies about TD (Andrews et al., 1993; De Ridder & Gastmans, 1996; Sutcliffe & Holmes, 1994; Zerwekh, 1983, 1997). The most common patient complaints of TD are dry mouth and thirst. These symptoms can be adequately relieved with meticulous mouth care, ice chips, and sips of fluids at the patient's request (De Ridder & Gastmans, 1996; Meares, 1994; Printz, 1988, 1992; Rousseau, 1991).

Ahronheim (1996) stated hydration has no palliative effect for the patient near death, but Fainsinger and Bruera (1997) noted terminally ill patients manifesting symptoms such as confusion or opioid toxicity might benefit from parenteral hydration. Therefore, all potential drawbacks and benefits of ANH must be carefully considered for each particular patient before implementation. Other considerations include discomfort and distancing associated with IV lines.

An TV insertion can be painful and, once in place, often requires restraint of the patient's hands. The IV also has a tendency to distance the family from the patient. This can interfere with the patient's ability to die with respect and dignity, another outcome criterion of the theory.

Patients and their families need to be included in the decision-making process about end-of-life care. A large part of the nurse's role is to educate patients and families about health- and illness-related issues so they can make informed decisions. Meares (1997) found family caregivers would be more receptive to TD if they had been educated about it. The results of the current study reveal many LTC nurses are unaware of the benefits of TD. This lack of knowledge prevents nurses from providing patients and their families with the information necessary to make an informed decision. The decision-making process involving the patient, family, and health care team together is another component of the experience of dignity and respect.

Additional research is necessary to answer many of the questions related to TD. Data could be collected through observation of terminally ill patients without interfering with their care and last few days of life. Intake and output could be recorded and compared with the number of times a person vomits, needs to be suctioned, or complains of thirst while receiving ANH or not. Established research tools measuring apathy and depression could also be used to measure the patient's psychological responses to TD.

STUDY LIMITATIONS

This study is limited by its crosssectional design using a convenience sample of nurses from two LTC facilities in a similar geographical location. The sample population was homogeneous, primarily White female nurses. A more culturally varied sample from a larger geographical area might have yielded different results. Also, the surveys were left for the staff to complete anonymously, so there was no way to verify that nurses and not other staff had completed them.

CONCLUSION AND NURSING IMPLICATIONS

This study has shown little consensus among LTC nurses concerning the benefits and drawbacks of TD. Although published reports document these benefits and drawbacks, this information is not widely used in clinical practice. This research also shows the number of deaths witnessed and the nurse's age are associated with the belief that TD is beneficial. Further research is needed to determine the best way to educate LTC nurses and to introduce this evidence-based material related to TD into the clinical situation - especially for younger and less experienced nurses. Continuing education is integral to the career development of RNs and LPNs.

The perception that TD is painful needs to be dispelled, so patients, their families, and interdisciplinary teams of doctors, nurses, clergy, social workers, and nutritionists can make informed decisions. Providing nursing care to dying individuals is a unique and challenging opportunity. Long-term care nurses need the most comprehensive and up-to-date information, as well as open minds, to provide the most appropriate and compassionate care possible.

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TABLE 1

SAMPLE CHARACTERISTICS

TABLE 2

EXPERIENCE WITH TERMINAL DEHYDRATION AND DEATH

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