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End-of-life decision making for nursing home residents with dementia: a survey of nursing home social services staff.

How people in the United States die, particularly how severely impaired older adults die, has become a topic of widespread interest in the gerontological community in the past 10 years. People in the United States are living longer and dying more slowly of chronic diseases that often shape the last months and years of their lives. The progressive course of chronic diseases blurs the boundary between "living" and "dying" and complicates medical decision making for those who are severely impaired but not necessarily in their last days, weeks, or months of life (Field & Cassel, 1997; Kaufman, 1998).

Some clarity about medical care for chronically ill people is emerging in end-of-life decision making for older adults with dementia, particularly of the Alzheimer's type. Increasingly, experts are rejecting the use of medical interventions for adults in end-stage dementia as a growing body of empirical research is consistently finding that treatments termed "life-sustaining" are often ineffective in sustaining life and quality of life (see Finucane, Christmas, & Travis, 1999; Gillick, 2000; Lacey, 2004; Volicer, 2001). As a result, experts in dementia argue that palliative care or comfort-oriented care should become the dominant paradigm of care for people in end-stage dementia (Callahan, 1995b; Post & Whitehouse, 1998; Solomon & Jennings, 1998; Volicer).

This issue is of critical importance in the 14,000 or so nursing homes in the United States, which may be the most concentrated sites of care for people in end-stage dementia. Dementia is a key determinant of permanent nursing home placement (Manton, 2003), and about 50 percent of all nursing home residents are cognitively impaired (Harrington, Swan, Wellin, Clemena, & Carrillo, 1999). Studies have found nursing homes, overall, to be deficient in the provision of palliative care to dying nursing home residents (Miller, Gozalo, & Mor, 2000; Zerzan, Stearns, & Hanson, 2000).

Little is known about the expertise of nursing home staff, including social services staff, regarding trends in dementia care, and in addressing end-of-life decision making for nursing home residents with dementia. To increase knowledge of social service roles in end-of-life decision making, I conducted a descriptive study of nursing home social services staff in New York State, using a self-designed instrument. The purpose of this descriptive study was multifold: to provide more information about social service involvement in advance directive discussions on admission and to assess the degree of consistency between social services staff attitudes about medical interventions and positions taken by dementia and palliative care experts.

EMPIRICAL RESEARCH AND END-STAGE DEMENTIA

End-stage dementia is caused by significant brain damage, usually from Alzheimer's disease, recurring strokes, or combinations of these and other diseases. End-stage dementia is typically marked by loss of most or all communicative abilities, including verbal abilities and eye contact; difficulty or inability to sit up and hold one's head up; loss of bladder and bowel control; and loss of all abilities for self-care (Cohen-Mansfield et al., 1996; see Simard & Volicer, 1998). Most older adults in end-stages of dementia have a diminished interest in and capacity for eating, and more than half have progressively worsening swallowing problems (Frisoni, Franzoni, Bellelli, Morris, &Warden, 1998; McCann, 1999; Volicer, 2001). The majority of those in end-stage dementia experience recurring infections, which are the most common cause of death for people with this disorder (Morrison & Siu, 2000; van der Steen, Ooms, van der Wal, & Ribbe, 2002; Volicer, Brandeis, & Hurley, 1998).

To address these declines in functioning, medical interventions typically considered in nursing homes include artificial nutrition or feeding tubes and artificial hydration to compensate for nutritional problems, cardiopulmonary resuscitation (CPR) for heart failure, and antibiotics for infections, particularly pneumonia. In addition, decisions about transferring residents to hospitals for more intensive interventions are commonly considered.

For much of the past 20 years, artificial nutrition or feeding tubes (which also provide hydration) were assumed to prevent aspiration pneumonia in adults who developed swallowing difficulties and were assumed to prevent "starvation" in older adults who could not or would not eat (Gillick, 2000; McCann, 1999). Empirical research has not supported these assumptions: Studies have shown that tube feeding is associated with higher, not lower, rates of aspiration pneumonia (Finucane et al., 1999) and that survival rates are similar for those who are tube fed and those who are not (Mitchell, Kiely, & Lipsitz, 1997; Sanders et al., 2000). Geriatric researchers have concluded that reduced intake of food and the ensuing weight loss in end-stage dementia are indicators of the onset of the dying process and that the most humane and effective interventions involve careful hand-feeding protocols that promote the dual sensory experiences of food and touch by a caregiver (Frisoni et al., 1998; Gillick, 2000; Volicer, 2001). Research on oriented, dying adults has found that these adults rarely experienced hunger, and when they did, they were satisfied by small amounts of food (McCann, Hall, & Groth-Juncker, 1994). Feeding tubes are not risk-free; insertion of the tubes is a surgical procedure, and infections can occur at the surgical site; a tube inserted in a person's abdomen also may cause agitation in the person receiving the tube, which could result in a need to restrain the individual (Frisoni et al., 1998; McCann, 1999). Some experts have recommended time-limited trials of tube feedings when the goals of this intervention are clear; if goals are not met, the feeding tube should be withdrawn (McCann, 1999; see Volicer). This approach is consistent with New York State law, which does not distinguish between withholding and withdrawing artificial nutrition.

Regarding hydration, some researchers argue that dehydration may be a greater comfort measure than artificial hydration because dehydration allows an individual to slip into a coma, whereas artificial hydration may prolong the dying process, cause painful swelling, and worsen other symptoms associated with hydration (Dunn, 1994; Gillick, 2000; Huang & Ahronheim, 2000).

Antibiotic treatment for infections is more controversial as antibiotics may provide some comfort to those who suffer from infections. However, because of the likelihood of recurrent infections (typically manifesting as pneumonia), antibiotics have limited effectiveness over repeated applications. Some argue that antipyretics are equally as effective as antibiotics at maintaining comfort for those in end-stage dementia (Volicer, 2001), although a recent study concluded that antibiotics, as a comfort measure for people with pneumonia, seem to be ineffective and contraindicated only for those clearly in end-stage dementia (van der Steen et al., 2002). Some argued that high fevers from infections allow individuals to slip into comas, thus easing the dying process (Ahronheim, Morrison, Baskin, Morris, & Meier, 1996).

Dementia and palliative care experts also are increasingly discouraging sending older adults in end-stage dementia to hospitals for curative medical interventions. Studies show that nursing home residents in end stages of dementia who are sent to the hospital have high mortality rates; more than half are in their last months of life (Fried, Gillick, & Lipsitz, 1997; Morrison & Siu, 2000). Experts decry the "trauma" that older adults experience when they are transferred from familiar nursing home environments to hospitals (Ouslander, Weinberg, & Phillips, 2000, p. 230), where dying is likely to occur in a "technologic cocoon" (Callahan, 1995a).

CPR, although not technically considered a life-sustaining treatment, is the intervention most commonly considered in medical settings for older adults. Research of the past 20 years has shown CPR to be almost 100 percent ineffective with severely ill or frail adults of all ages (see Finucane & Harper, 1999), and the process of resuscitation often results in physical damage such as broken bones and punctured lungs of the deceased person (see Dunn, 1994). Because CPR ineffectiveness for very old and frail individuals is widely known and accepted in the medical community, physicians often initiate do-not-resuscitate (DNR) decision making for their elderly patients (Field & Cassel, 1997). Similarly, in nursing homes, research has shown that DNR orders are the most commonly addressed and implemented end-of-life decisions (Bradley, Peiris, & Wetle, 1998; see Finucane & Harper, 1999; see Kane & Burns, 1997).

In conclusion, empirical evidence supports that CPR, artificial nutrition and hydration, hospitalization, and antibiotics do not improve quantity of life or quality of life for those in end-stage dementia. Rather, such interventions may impose discomfort and burdens on the individuals, hence the growing emphasis on palliative care as the optimal course of care for people in end-stage dementia.

DECISION-MAKING ISSUES

Older adults in late and end stages, by definition, lack the cognitive capacity and communication skills essential to provide informed consent and to participate in health care decisions. This underscores the importance of advance decision making and the roles of surrogate decision makers for those in end-stage dementia. Social work places a primary value on the self-determination of individuals (NASW, 2000) and the central importance of autonomy in decision making, including end-of-life decision making (Csikai & Bass, 2000; Galambos, 1998). When older adults' decisions are not made in advance or when their wishes are unclear, family members, by default, become their decision makers. Research suggests most older adults desire devolvement of decision making to family members in the event of incapacity (Puchalski et al., 2000). Family members, however, have reported feeling burdened when they are the sole decision makers for older adults with dementia (Forbes, Bern-Klug, & Gessert, 2000; Mezey, Kluger, Maislin, & Mittelman, 1996). The role of health care providers in end-of-life decision making can be significant: Substantial research has shown that ill individuals and their family members are reluctant to make decisions--or are unaware that decisions have to be made--without the guidance of their health care providers (Drought & Koenig, 2002; Kaufman, 1998; Lynn et al., 2000).

Nursing home social services staff have become much more involved in assisting with end-of-life decision making since the early 1990s, with the passage of the Patient Self-Determination Act (PSDA) (P.L. 101-508) and the implementation of federal regulations to strengthen the role of social services in nursing homes. The PSDA has many provisions, including the requirement of nursing homes to discuss advance directives on a resident's admission to a nursing home (General Accounting Office [GAO], 1995).

In many parts of the country, nursing home social services departments have become primarily responsible for discussing advance directives during the admissions process (Happ et al., 2002; Mezey, Mitty, Rappaport, & Ramsey, 1997). Recently, the term "advance directives" has become synonymous with the health care proxy document--a form available in most health care settings in which individuals can state future medical treatment preferences and name a surrogate or proxy to carry out those decisions in the event of incapacity.

The degree to which advance directives actually direct providers to limit medical interventions has been found questionable (GAO, 1995; The SUPPORT Principal Investigators, 1995), yet advance directives remain highly valued by practitioners (Drought & Koenig, 2002; Osman & Perlin, 1994), probably because they provide some legal authority and guidance for future treatment preferences.

A number of problems have been cited in the implementation of advance directives in nursing homes. Earlier research has concluded that advance directive discussions are too bureaucratic and focused on DNR decisions and that families and new residents are too emotionally overwrought at admissions to consider end-of-life treatment decisions (Bradley et al., 1998; GAO, 1995). Discussion of an advance directive on nursing home admission has also been identified as problematic because of the cognitive limitations of many newly admitted residents (Mezey, Mitty, Bottrell, Ramsey, & Fisher, 2000; Walker, Bradley, Blechner, & Wetle, 1998).

Advance directives are considered extremely important in New York State, where the laws governing surrogates' rights make it particularly difficult for family members who are not specifically named as health care proxies or surrogates to refuse artificial nutrition and hydration on behalf of an incapacitated individual. Nursing home social workers in New York State have said that the state law has been problematic in this decision-making arena (Chichin, Zuckerman, & Olson, 1994).

Current information about nursing home social service roles in end-of-life decision making reveals large gaps in knowledge. Little is known about the degree to which social services staff discuss treatment decisions beyond DNR orders, few have attempted to confirm criticisms of advance directive implementation problems with practitioners, and few have asked about social services workers' attitudes about and knowledge of life-sustaining interventions commonly considered for older adults in end-stage dementia. Answering these questions was the purpose of the research described in this article. It is arguable that such information helps provide a clearer picture of end-of-life decision making in nursing homes for residents in end-stage dementia.

THE STUDY

Study Questions

On the basis of the theoretical issues, the following questions were addressed in the study:

1. To what degree do nursing home social services staff address particular medical treatments during discussion of advance directives on admission?

2. What level of agreement do respondents have with issues relative to advance directive discussions identified in previous research?

3. Do nursing home social services staff have accurate knowledge regarding specific issues relative to medical treatments for people in end-stage dementia?

4. What are respondents' beliefs and comfort levels regarding withholding and withdrawing of medical treatment, and how consistent are these beliefs and comforts regarding positions taken by palliative care experts?

Instrument Development

All the items in the questionnaire were derived from three sources: (1) earlier research and related literature, (2) interviews and focus groups with nursing home social workers, and (3) feedback from academic and other professional social workers. Items were grouped into categories, which were not designed for scaling, because the primary purpose of the survey was descriptive. Social work practitioners with extensive health care expertise and academic faculty with specialties in gerontology established face and content validity of the instrument through successive reviews of the questionnaire. Survey items were clustered into nine topic areas, including advance directive responsibilities, advance directive perceptions, perceptions of end-of-life issues, palliative care principles, and demographics.

Sample and Data Collection

The sample was drawn from skilled nursing facilities in New York State. The sample included any staff who self-identified as a nursing home social worker or social services staff. Nearly half of nursing home staff do not have social work degrees; therefore, limiting the sample to bona fide social workers would have been awkward and would have significantly limited participation. Degree status was included as a demographic variable. Responses were anonymous.

Samples were drawn from both for-profit and not-for-profit nursing homes. In New York State, about 660 nursing homes are divided between not-for-profit and public (government-owned) facilities (about 54 percent), and the rest are for-profit facilities (Harrington et al., 1999).

The not-for-profit sample was a convenience sample drawn from nursing home social services staff participating in a statewide conference in central New York sponsored by the state's largest not-for-profit membership organization. Questionnaires were included in participants' packets, and respondents had the option of returning the survey on-site or by mail. Questionnaires were also available to participants to distribute to staff at their respective facilities. Those questionnaires were returned by mail. Nearly 185 surveys were distributed, and 93 were returned.

The state's largest for-profit membership association provided a mailing list of its membership and a letter of endorsement. A stratified, representative sample of eligible facilities was drawn, and 100 questionnaires were mailed to nursing homes across the state. The sample was stratified by size of facility (that is, number of beds) and geographic location. Forty-five questionnaires were returned by mail. A total of 138 social services staff participated in the study--slightly less than half of eligible participants (Table 1).

RESULTS

All responses were computer coded, and data were analyzed with SPSS version 10.0. Results of the univariate analyses are reported. Statistical analyses were conducted to identify relationships between demographic variables, and those results are discussed further. Analyses were also conducted to identify whether there were differences in responses between the for-profit and the not-for-profit subsamples. No statistically significant patterns of responses were identified. Analyses were also run to determine whether academic degree status mediated responses to items. Again, no patterns of responses were statistically significant.

Demographics

Regarding facility size, the total sample was somewhat evenly divided, with the greatest percentage of responses coming from medium and large facilities (Table 1). Although not statistically significant, a disproportionate percentage of not-for-profit responses came from large facilities, and a disproportionate percentage of for-profit responses came from small facilities. Half of the respondents reported working in suburban nursing facilities; smaller percentages worked in rural (28 percent) and urban (22 percent) nursing facilities. No statistically significant differences were found for the two subsamples. The one variable with statistically significant differences between the subsamples was geographic location. Probably due to sampling procedures, a disproportionate percentage of respondents worked in facilities in the central and northeastern regions of the state (81 percent of the total sample), and a disproportionate percentage of for-profit respondents came from western and New York City regions. Of the total sample, 62 percent were age 40 and older. In the total sample, 42 percent of respondents had MSW degrees, and 36 percent of respondents had bachelor's degrees that were not in social work. Much smaller percentages had BSW degrees or other graduate degrees. Thirty-seven percent of the total sample reported earning more than $40,000 annually; almost 40 percent of the sample earned between $30,000 and $39,999; and almost 25 percent earned less than $30,000 annually. Respondents reported, on average, about 101/2 years of experience. Regarding age, education degrees, salary, and years of experience, there were no statistically significant differences between the not-for-profit and the for-profit samples.

Bivariate analysis of demographic variables revealed that those respondents with higher salaries were more likely to have graduate degrees and more years of experience. Respondents with higher salaries also were more likely to be older and more likely to be employed by larger facilities, especially in the New York City regions.

Advance Directive Responsibilities

Because the questions reflected a diversity of content on end-of-life issues, categories of items could not be summated. Almost all (97 percent) of respondents identified themselves as being responsible for discussing advance directives on admission (Table 2). About 90 percent of these respondents said that they often or always provided written information to newly admitted residents and family members (a PSDA requirement). Consistent with the literature, the majority of respondents said they encouraged DNR decisions (90 percent). Almost three in four respondents said that they helped families clarify their thoughts about life-sustaining treatment choices. More than 50 percent of the sample reported that they often or always discussed benefits and risks of artificial nutrition and hydration, yet only 11 percent said that they often or always addressed risks and benefits of antibiotics.

Advance Directive Perceptions

Consistent with earlier findings, most respondents (91 percent) agreed or strongly agreed that end-of-life decision making is easier when a nursing home resident has a health care proxy (Table 3). Findings of earlier studies were only partially supported by other findings in the present study. For instance, 48 percent of respondents agreed or strongly agreed that family members are too overwhelmed during the admissions process to fully understand advance directives, and 41 percent agreed or strongly agreed that family members have already made decisions to limit treatment before nursing home placement. As other literature has noted, a resident's cognitive capacity on admission is problematic: In the present study, only 25 percent of respondents agreed or strongly agreed that most newly admitted residents have the cognitive capacity to complete a health care proxy. Fewer than half of the sample agreed that social work is the discipline best suited to discussing advance directives on admission. Almost half the sample agreed that they were pressured to obtain DNR orders, 47 percent agreed they are sometimes caught in facility-family ethical dilemmas, and 75 percent agreed that almost everything they learned about advance directives occurred in their places of employment.

Knowledge of Empirical Findings

More than 90 percent of respondents correctly identified that CPR can result in broken bones and punctured lungs (Table 4). Three-fourths of respondents identified as accurate the statement that people who are dying rarely experience hunger, and slightly more than 60 percent knew that most palliative care experts believe that dehydration does not cause distress in the dying. However, only 37 percent were aware that, according to empirical findings, tube feeding does not prevent aspiration pneumonia, and only 25 percent knew that antibiotics have limited effectiveness for people in end-stage dementia.

Comfort with Withholding and Withdrawing Medical Treatment

Overall, more than half of respondents evidenced comfort with withholding or withdrawing treatment from residents in end-stage dementia: Fifty percent said they were uncomfortable if a resident did not have a DNR order, 31 percent were uncomfortable withholding antibiotics from a resident with pneumonia, and only 23 percent were uncomfortable with the thought of removing a feeding tube from a resident in end-stage dementia (Table 5). Thirty-six percent believed that residents in end-stage dementia with swallowing problems could starve to death without a feeding tube. However, the "neither agree nor disagree" category evinced a large number of responses to these questions. For instance, 39 percent of participants chose this response in relation to hospitalization of residents in end-stage dementia only for comfort care, and 24 percent chose this category regarding comfort/discomfort in removing a feeding tube from a resident in end-stage dementia.

DISCUSSION

Advance Directive Responsibilities

Results showed that almost all nursing home social work respondents are responsible for the introduction of advance directives and that most social workers provide written information and explain the form, as generally required by state and federal dictates. However, this study showed that many nursing home social workers--more than three-fourths of respondents--perceived that they extended themselves beyond legal requirements and helped families clarify their thoughts about life-sustaining treatment choices. Responses from this item do not necessarily contradict earlier findings indicating that advance directive discussions are too constricted, but the response to this item suggests that more information is needed about the content of social worker-family advance directive discussions: Research that relies on documentation to draw conclusions about the content of discussions may lack validity.

Results from these questions also show that a substantial percentage of social workers address artificial nutrition and hydration on admission, and a smaller percentage frequently address the use of antibiotic treatment. When this information is coupled with the high percentages of inaccurate responses to questions about empirical findings on specific treatment issues, some concerns emerge. For example, 50 percent of the sample said they often or always discuss artificial nutrition and hydration on admission, yet only 36 percent of the sample reported accurate knowledge of the risk of aspiration pneumonia with tube feedings. These findings strongly indicate that nursing home social workers need ongoing continuing education if they are to function effectively as educators about advance directives during the admissions process.

Perception of Advance Directives

Consistent with earlier literature, advance directives or health care proxies were highly valued by the respondents in this sample: Ninety-one percent of the sample agreed that end-of-life decision making is easier with a documented health care proxy. This endorsement may be due to the value of advance directives given the restrictiveness of New York State's health care proxy law, and it suggests that--at least from the perspective of social services staff--advance directives influence care decisions in nursing homes.

Responses to two other items support earlier findings that the timing of advance directives can be problematic during the admissions process. That is, when only 25 percent of respondents agree that newly admitted residents have the cognitive capacity to complete health care proxy forms and almost 50 percent agree that families are too overwhelmed at admissions to fully understand advance directives (and many have not decided on treatment issues before nursing home admission), then the value of introducing advance directives during admissions may be of little use to many older adults and their family members. Responses to these items indicate that providers need to address advance directive decision making earlier in the trajectory of dementia. Also, responses related to families feeling overwhelmed on admission indicate that follow-up discussions with family members should occur at a time when family members are more emotionally prepared to address their relative's long-term well-being. Also, earlier studies have criticized nursing home admissions staff for focusing on DNR decisions; responses from this study suggest that the focus on DNR orders during the admissions process probably derives from administrative dictates.

Another finding from the present study raises questions. That is, 97 percent of the sample indicated responsibility for advance directives, yet only 45 percent agreed or strongly agreed with the statement "Social work is the discipline best suited to discussing advance directives with residents and family members." Some respondents wrote that either doctors should be responsible for advance directives or the discussion of advance directives should be presented within an interdisciplinary framework. Further research could identify why so many social services staff do not believe the profession is best suited for advance directive discussions on admissions. Altogether, such findings suggest that nursing home social workers may benefit from education about medical interventions for older adults with dementia and from efforts by nursing facilities to better coordinate palliative care approaches to minimize conflicts.

Beliefs and Comfort Regarding Withholding and Withdrawing Medical Interventions

Results indicate that wide variation existed among respondents regarding withholding and withdrawing of treatments; responses indicated much ambivalence about treatment issues currently endorsed by palliative care experts. Caution must be taken in interpreting these findings; participants' reasons for choosing the "neither agree nor disagree" category were not defined. For example, only 30 percent of respondents believed that residents in end-stage dementia should be sent to the hospital for comfort care only, 32 percent disagreed, and 40 percent said "neither agree nor disagree." Multiple explanations are possible for this and similar findings. For instance, a respondent might have believed that residents in end-stage dementia should be sent to a hospital for care because of liability issues or because the nursing facility provides inadequate care for suffering residents. The respondent could believe that certain intrusive interventions are appropriate for people in end-stage dementia. Further research can elucidate the reasons for such discrepancies in responses and thus provide direction for future palliative care interventions in nursing homes.

STUDY LIMITATIONS

First, sampling methods and responses limit generalizability to all nursing home social services staff in New York State because the sample was not representative of all nursing home social services staff in New York. It is likely that those social services staff with the greatest interest and knowledge in the area of end-of-life issues responded to the questionnaire. Some social services staff declined to participate because they did not have time or because they already were participating in other research on end-of-life issues. The data also are limited by the nature of the survey. A broad cross-section of questions was posed to participants, with little depth in any specific areas. Thus, categories of items could not be scaled. The lack of depth in content, and the limited statistical analyses, indicates that information can be taken only at face value, and conclusions based on the material gathered must be narrow in scope.

Study findings suggest a need for continuing education in end-of-life care issues for nursing home social workers. In particular, results of the present study indicate the following:

* Many nursing home social services staff would benefit from regular and ongoing education on palliative care practice standards for people with advanced and end-stage dementia.

* Newly admitted residents and family members who are overwhelmed during the admissions process should be targeted for follow-up discussions on advance care planning when these individuals are more emotionally prepared to discuss palliative care.

* Responses to this survey suggest many social services staff deal with ethical dilemmas, and many are uncomfortable with withholding or withdrawing treatment from residents with dementia. Educational efforts need to be more than factual; they must also include experiential components that address social services staff's concerns and biases about treatment issues.

Original manuscript received August 6, 2003

Final revision received May 11, 2004

Accepted August 25, 2004

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Original manuscript received August 6, 2003 Final revision received May 11, 2004 Accepted August 25, 2004

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Puchalski, C. M., Zhong, Z., Jacobs, M. M., Fox, E., Lynn, J., Harrold, J., Galanos, A., Phillips, R. S., Califf, R., & Teno, J. M. (2000). Patients who want their family and physician to make resuscitation decisions for them: Observations from SUPPORT and HELP Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment. Hospitalized Elderly Longitudinal Project. Journal of the American Geriatrics Society, 48, S84-S90.

Sanders, D. S., Carter, M. J., D'Silva, J., James, G., Bolton, J. G., & Bardhan, K. D. (2000). Survival analysis in percutaneous endoscopic gastrostomy feeding: A worse outcome in patients with dementia. American Journal of Gastroenterology, 95, 1472-1475.

Simard, J., & Volicer, L. (1998). Barriers to providing hospice care for people with dementia. In L. Volicer & A. Hurley (Eds.), Hospice care for patients with advanced progressive dementia (pp. 231-246). New York: Springer.

Solomon, M. Z., & Jennings, B. (1998). Palliative care for Alzheimer patients: Implications for institutions, caregivers, and families. In L. Volicer & A. Hurley (Eds.), Hospice care for patients with advanced progressive dementia (pp. 132-154). New York: Springer.

The SUPPORT Principal Investigators. (1995).A controlled trial to improve care for seriously ill hospitalized patients: The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT). JAMA, 274, 1591-1598.

van der Steen, J. T., Ooms, M. E., van der Wal, G., & Ribbe, M. W. (2002). Pneumonia: The demented patient's best friend? Discomfort after starting or withholding antibiotic treatment. Journal of the American Geriatrics Society, 50, 1681-1688.

Volicer, L. (2001). Management of severe Alzheimer's disease and end-of-life issues. Clinics in Geriatrics Medicine, 17, 377-391.

Volicer, L., Brandeis, G. H., & Hurley, A. C. (1998). Infections in advanced dementia. In L. Volicer & A. Hurley (Eds.), Hospice care for patients with advanced progressive dementia (pp. 29-47). New York: Springer.

Walker, L., Bradley, E., Blechner, B., & Wetle, T. (1998). Problems in implementing the Patient Self-Determination Act. Journal of Mental Health and Aging, 4(1), 83-96.

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Debra Lacey, PhD, CSW, is assistant professor, School of Social Work, Florida Atlantic University, 777 Glades Road, Boca Raton, FL; e-mail: dlacey@fau.edu.
Table 1: Characteristics of Social
Services Workers in Skilled-Nursing
Facilities New York State

Variable % N

 Small (<120) 24 33
 Medium (120-200) 34 47
 Large (201+) 42 57

Facility type

 Urban 22 29
 Suburban 50 65
 Rural 28 36

Geographic location

 Western New York 15 20
 Central/northeastern 55 75
 Five boroughs 14 19
 Metropolitan 16 22

Age

 20-29 19 26
 30-39 19 26
 40-49 34 47
 50+ 28 38

Academic degree

 Bachelor's (not BMW) 36 47
 BSW 10 13
 Graduate (not MSW) 11 15
 MSW or CSW 42 56

Salary

 $29,000 or less 24 33
 $30,000-39,999 39 52
 $40,000-44,999 12 16
 $45,000 or more 25 34

Gender

 Male 8 11
 Female 92 124

 M SD

Number of years worked in SNF 10.62 6.94

Note: SNF = skilled-nursing facility.

Table 2: SNF Social Services Workers' Response to Advance
Directive Responsibilities at Admission (N = 138)

 Never/Rarely/ Often/
 Occasionally Always

Statement % N % N

1. I provide written information. 11 14 90 120

2. I explain how to fill out a
 health care proxy form. 11 15 90 121

3. I encourage residents/family
 members to make a decision
 about a DNR order. 10 13 90 121

4. I discuss, in general, the
 benefits and risks of artificial
 nutrition and hydration. 47 64 52 71

5. I discuss, in general, the
 benefits and risks of
 antibiotics. 89 118 11 15

6. I help residents/family members
 clarify their thoughts about
 life-sustaining treatment. 28 38 72 97

Notes: The five-point scale ("never, rarely, occasionally,
often, always") was collapsed into two categories. Percentages
were rounded up so total percentages may exceed 100%. Numbers
of responses may vary due to missing data. SNF = skilled-nursing
facility. DNR = do not resuscitate.

Table 3: SNF Social Services Workers' Responses to Likert-Scaled
Questions about Advance Directives (N = 138)

 Agree/
 Strongly Agree
Statement % n

1. End-of-life decision-making is easier
 when a resident with dementia has a
 health care proxy. 91 124

2. Most [of my] advance directive
 knowledge learned from nursing home. 75 104

3. I feel pressured to obtain family
 consent for a DNR order as soon as
 possible after the admission. 49 67

4. Most families are too overwhelmed
 during the admissions process to
 fully understand advance directives. 48 65

5. Sometimes I feel caught between
 medical staff and family when there
 is an ethical issue around advance
 directives. 47 64

6. Social work discipline is best suited
 to discussing advance directives with
 residents and family members. 45 61

7. Most family members of residents with
 advanced or end-stage dementia have
 made up their minds about
 life-sustaining treatment prior to
 nursing home admission. 41 56

8. Most newly admitted residents have
 the cognitive capacity to complete a
 health care proxy. 25 34

Notes: The five-point scale ("strongly agree, agree, neither
agree nor disagree, disagree, strongly disagree") was collapsed
into a three-point scale. Only the agree/ strongly agree responses
are reported here. SNF = skilled-nursing facility DNR = do not
resuscitate.

Table 4: SNF Social Services Workers' Responses to "True/False"
Questions about Life-Sustaining Treatment Issues

 True (Accurate)
 Statements

Statement % n

1. CPR, when performed on frail, older
 adults, can result in broken bones
 and punctured lungs. 99 132

2. Palliative care experts believe that
 people who are dying rarely
 experience much hunger. 78 105

3. Many palliative care experts believe
 that dehydration does not cause great
 discomfort to dying, older adults. 61 82

4. Artificial nutrition (tube feeding)
 often does not prevent aspiration
 pneumonia for people in end-stage
 dementia with swallowing problems. 37 49

5. Antibiotics have limited
 effectiveness in treating infections
 in end-stage dementia. 25 33

Notes: The three-point scale ("true, false, don't know")
was collapsed into two categories ("true" and "false/don't know").
Only the true (accurate) responses are reported here.
SNF = skilled-nursing facility CPR = cardiopulmonary resuscitation.

Table 5: SNF Social Services Workers' Responses to Likert-Scaled
Questions about Beliefs and Comfort Regarding Withholding or
Withdrawing of Medical Treatment

 Neither Agree

 Agree nor Disagree Disagree

Statement % n % n % n

1. I am uncomfortable when a
 resident in end-stage dementia
 does not have a DNR order. 50 69 26 35 24 33

2. Residents in end-stage
 dementia who lose their
 swallowing ability could
 starve to death if they do not
 get a feeding tube. 36 49 20 28 44 60

3. I am uncomfortable with the
 thought of not giving
 antibiotics to a resident in
 end-stage dementia who
 develops pneumonia. 31 43 23 31 46 63

4. Residents in end-stage
 dementia should not be sent
 to the hospital except for
 comfort-related care. 30 40 39 52 32 43

5. I am uncomfortable with the
 thought of removing a feeding
 tube from a resident in
 end-stage dementia. 23 31 24 33 53 73

Notes: The five-point scale ("strongly agree, agree, neither agree
nor disagree, disagree, strongly disagree") was collapsed into three
categories (agree, neither, disagree). Percentages were rounded up,
so some total percentages may exceed 100%. Variation in the number
of responses is due to missing data. SNF = skilled-nursing facility.
DNR = do not resuscitate.
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