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a Center for Practice Management and Outcomes Research, VA Ann Arbor Healthcare System, Ann Arbor, MI
Correspondence: Faith P. Hopp, PhD, Center for Practice Management and Outcomes Research, VA Ann Arbor Healthcare System, PO Box 130170, Ann Arbor, MI 48113-0170. E-mail: Faith.Hopp{at}med.va.gov.
Decision Editor: Vernon L. Greene, PhD
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Abstract |
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Key Words: Advance directives • End-of-life care • Decision making • Surrogates
The growth of sophisticated life-sustaining medical technology, combined with greater attention to medical care at the end of life, has resulted in increasing attention to issues related to advance care planning (Council on Ethical and Judicial Affairs, American Medical Association 1992
). These issues are particularly relevant for the growing number of older adults in the United States and their family members, who face increasingly complex choices related to initiating, withholding, and terminating medical treatments (Diamond, Jernigan, Moseley, Messina, and McKeown 1989; Heynor 1998; Zweibel and Cassel 1989).
Growing attention has been paid in recent years to advance directives, documents that allow persons to designate their preferences for medical care in the event that they are unable to communicate these wishes at some time in the future. Advance directives have been developed as a mechanism for enhancing the rights of individual patients, clarifying patient preferences for medical care, and protecting both patients and surrogate decision makers from legal liability for health care decisions at the end of life (Cole and Holstein 1995). One type of advance directive, the living will, allows persons to specify in writing their preferences for medical care. The other type of advance directive, the durable power of attorney for health care (DPAHC), is a legal document that allows persons to designate a person to make medical decisions for them if they are unable to do so. The Patient Self-Determination Act, which took effect in 1991, requires hospitals, nursing homes, and home care agencies to inform patients of their right to accept or refuse medical care and to complete an advance directive, to document the existence of advance directives, and to implement policies and procedures on advance directives for patients and staff (LaPuma, Orentlicher, and Moss 1991). However, despite such efforts, few older persons have actually completed advance directives, and the proportion of adults completing them ranges from 4%–20% across various studies (Hoefler 1997).
Although few persons complete advance directives, greater numbers of persons engage in informal discussions with family members concerning health care preferences (Elpern, Yellen, and Burton 1993). In fact, one reason that people give for not completing an advance directive is that they feel that they can rely on others, particularly family members, to make health care decisions for them if they are unable to do so (High 1994). Family members, because of their long-standing relationships and knowledge of the older person's values and preferences, are often in a unique position to bridge communication gaps between the patient and the health care team, communicate knowledge of the older person's values and preferences, and provide needed emotional support (Jecker 1990). Older persons, faced with the prospect of complex medical decisions, usually expect that family members will make medical decisions for them if they are unable to do so (High 1994). Moreover, health care providers often consult with the families of older persons in such situations (High and Rowles 1995), a practice that affirms the importance placed on the role of family members as surrogate decision makers by legal experts and by society as a whole (Cole and Holstein 1995).
Although a number of studies have examined the factors that predict the likelihood of advance directive completion (Eleazer et al. 1996; Elpern et al. 1993; Levin et al. 1999; Stelter, Elliot, and Bruno 1992), no existing studies have examined the factors that predict informal discussions on matters concerning health care preferences. In order to better identify those older persons most in need for intervention and counseling on issues related to advance care planning, more information is needed on how and under what circumstances older persons communicate health care preferences to those who are close to them (High 1994). There is also little information available concerning the preferences of older adults for specific types of family members as informal surrogate decision makers or as a formally appointed DPAHC. Most states have policies that give a high priority to family members as substitute health care decision makers, but little information is available concerning the extent to which these priorities fit with the actual preferences of older persons for family decision makers (High 1987).
Most existing studies examining issues related to advance care planning have included study participants in inpatient or outpatient hospital settings, and the findings may not be generalizable to the United States population as a whole. There is a particular need for information on advanced care planning among community-based, nonclinical samples of older adults (Marshall and Levy 1990). Information from a representative sample of older adults in the United States is needed in order to identify the preferences of older persons for surrogate decision makers and the factors related to both formally executed advance directives and informal discussions concerning medical preferences in the event of decisional incapacity.
This study examines the preferences of a sample of community-dwelling older persons for informal surrogate decision makers, as well as the factors that predict the likelihood of communicating medical care preferences through both informal discussions and formally designated advance directives. The specific research questions are as follows:
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) suggests that older people have a hierarchical preference for support and assistance from family members and turn to nonfamily members only when familial sources of support are unavailable. The model further suggests that older people have a particular preference for support from spouses, when available, followed by children and other relatives. Consistent with this theoretical perspective, studies suggest that spouses provide the most comprehensive care for older persons (Tennstedt, Crawford, and McKinlay 1993), that children are the most frequently chosen helpers for those without spouses (Penning 1990), and that older persons turn to nonfamily members such as neighbors and friends only when familial sources of assistance are not available (Cantor 1979).
Very little research is available concerning the applicability of the hierarchical compensatory model to the preferences of older persons for informal medical surrogate decision makers. One of the few studies to examine this issue was conducted based on a survey of 40 residents of Fayette County, Kentucky (High 1988). Consistent with the hierarchical model, this study found that married persons were most likely to designate a spouse as the person they would want to make the final decision about health care if they were too sick to do so; among those who were widowed, children were most often designated. Only those who did not have available family members chose nonrelatives such as friends, doctors, and lawyers. Additional work, based on larger and more representative samples than those available in the High 1988 study, are needed in order to further test the applicability of Cantor's hierarchical model to the preferences of older persons for surrogate decision makers.
Factors Related to Completion of Advance Directives
Existing studies have focused on the role of sociodemographic and health factors as predictors of advance directive completion. A study based on analysis of medical records from the Program for All Inclusive Care of the Elderly (PACE) found that African American patients were significantly less likely than White patients to complete a DPAHC (Eleazer et al. 1996). Another study, based on surveys of older adults attending nutrition sites, found that White participants were significantly more likely than non-White participants to indicate that they planned on completing a living will in the future (Stelter et al. 1992). Advance directive completion has also been found to be associated with higher rather than lower levels of educational attainment (High 1993; Stelter et al. 1992). Some evidence suggests that race and educational level appear to have independent effects on durable power of attorney appointment, because African Americans are less likely to complete a DPAHC than Whites even after controlling for education (Eleazer et al. 1996). Completion of advance directives has also been found to be higher among persons in older age groups compared with younger age groups (Elpern et al. 1993; Levin et al. 1999) and among those with lower self-reported health status compared with those with higher self-reported health status (Elpern et al. 1993).
Despite the importance of family members in surrogate decision making, relatively few studies have examined the role of family structure on the likelihood of completing advance directives. Although one study found no significant difference by marital status in the likelihood of completing advance directives (Elpern et al. 1993), most other studies have not included marital status as an explanatory factor. Consistent with the hierarchical compensatory model, married persons might prefer to bypass an advance directive because of a belief that their spouse already knows their medical care preferences, and because the close and continual proximity of spouses provides greater opportunities for informal discussion of preferences for medical care. Persons who are not married, in contrast, may be less certain that their children and other family members know their health care preferences, and may therefore seek formal advance directives as a means of ensuring that their medical care preferences are clearly communicated.
Factors Related to Informal Discussion of Health Care Preferences
By far the most common method of communicating health care preferences is through informal communication with family members or other informal network members. A study of clinical outpatients at an academic medical center found that more than half (65%) had discussed with someone how they wished to be treated if they became critically ill. Of these persons, 55% had discussed these matters with family members and 18% had discussed them with friends, while only 7% had engaged in discussions with physicians (Elpern et al. 1993). Even though informal discussion is the most common means of communicating health care wishes, very little is known about the likelihood of actually engaging in such discussions.
Sociodemographic and health factors, which have been shown to predict the likelihood of completing advance directives, may also be associated with the likelihood of engaging in informal discussions. In particular, African Americans and persons with lower levels of education may be less likely to have informal discussions about health care preferences, whereas persons with lower self-rated health status may be more likely to engage in informal discussions because they perceive a greater need to communicate their preferences for health to those who are close to them. Because the marital relationship is usually characterized by close and continual proximity between spouses (Litwak 1985), married persons are likely to have greater opportunities for informal discussion of health care preferences. In contrast, persons who are not married are not likely to have the same opportunities for informal discussion.
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). Almost all of the younger respondents (those born between 1914 and 1923) were selected based on a multistage area probability sample from a screening of household units originally conducted for the Health and Retirement Study (HRS). For older respondents (those born in 1913 or earlier), a dual sampling frame was used to obtain data on frail older persons who might not otherwise be included based on a multistage screening. Half of the respondents in these older age groups were obtained through list samples from the enrollment database, a subset of the Medicare Beneficiary Survey, while half were obtained through the same HRS screening process used for the younger respondents (Soldo, Hurd, Rodgers, and Wallace 1997).
The sample for this study consists of 520 persons who were aged 70 and older at the time of the first wave of the AHEAD study, and who were subsequently selected as respondents to an experimental module as part of the second wave of the AHEAD study conducted in 1995. The experimental modules are given to a random selection of respondents and are designed to provide preliminary data on areas of interest to researchers where there are few valid measures or well-developed research hypotheses (Soldo et al. 1997). The module used for the present study consisted of a series of questions concerning advance care planning and preferences for health care decision makers.
The characteristics of the study sample are shown in Table 1 . The majority of the sample was female (62.6%), White (90.7%), and between 70 and 80 years of age (63.1%). Approximately one third (32.0%) had less than a high school education, half (50.6%) had a high school education, and roughly one fifth (17.4%) had a college education or higher. Approximately one tenth (11.4%) reported excellent health status, while slightly more than one fourth reported their health as very good (25.9%) or good (33.2%). Approximately one fifth (20.6%) reported fair health status, while a smaller number (8.9%) reported poor health status. Slightly fewer than one half (44.3%) were married and had living children, while roughly two fifths (39.3%) were not married (widowed, divorced, or separated) and had living children. Fewer were married with no living children (7.0%) or not married with no living children (9.4%).
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Preferences for DPAHCs are based on questions in which respondents who reported having a DPAHC were asked to indicate whom they had appointed as a DPAHC and their relationship to this person. Potential response categories are identical to those for the question concerning surrogate decision makers. However, respondents were allowed only one response category for this question.
Completion of a living will is based on the question, "Do you have written instructions about the type of medical treatment you would want to receive if you were unconscious or somehow unable to communicate?" Completion of a DPAHC is based on the question, "Have you made legal arrangements for someone to make decisions about your care or medical treatment if you became unable to make decisions yourself? This is sometimes called a Durable Power of Attorney for Health Care." Those who answered affirmatively to the first question were coded as having a living will (1 = yes), and those who answered affirmatively to the second question were coded as having a DPAHC (1 = yes).
Informal discussion of health care preferences is based on a question asked of persons who indicated that they had someone they would trust to make health care decisions. Those respondents who answered affirmatively to this question were asked, "Have you talked with (this person/these persons) about what type of care you would want if you couldn't make decisions for yourself?" A dichotomous variable is constructed to represent whether respondents reported having informal discussions of health care preferences (1 = yes, 0 = no).
Sociodemographic and health factors that previous studies have identified as predictors of completion of living wills and DPAHCs are used on the regressions predicting completion of these types of advance directives and are also used as predictors of the likelihood of engaging in informal discussions. Race is measured as a dichotomous variable (1 = African American, 0 = White). Age is based on a series of dummy variables representing ages 75–79, 80–84, and 85+, with the youngest age group (aged 70–74) as the reference group category. Education is based on dummy variables representing high school and college education, and less than high school is the omitted reference category. Self-rated health status is based on a five point scale (1 = poor, 5 = excellent).
In order to investigate the possible impact of family structure on the dependent variables, three dummy variables are used to represent marital status and the presence of living children. The dummy variable categories include not married with living children, married with no living children, and not married with no living children. Married with living children is the omitted reference category.
Analytic Strategy
To address the first research question concerning preferences for health care decision makers, frequency tables are computed on the percentage of respondents mentioning preferences for different types of decision makers (e.g., spouse, child/child-in-law/grandchild, other relative, nonrelative), and on the percentage of persons who mention both spouse and child/child-in-law/grandchild as decision makers. Frequency distributions are computed separately for persons with different family configurations, including married and living children, married and no living children, not married and living children, and not married and no living children. To address the second research question concerning preferences for DPAHC, similar frequency tables are constructed to indicate the category of persons who are appointed as DPAHC for those respondents who indicate that they have a DPAHC (n = 137). For the analysis for both research questions, sample weights are used to provide correct national-level estimates for the frequency distributions.
To address the third and fourth research questions, three logistic regressions are used to predict: (a) the likelihood of having a living will; (b) the likelihood of having a DPAHC; and (c) the likelihood of having an informal discussion of health care preferences. For all of the logistic regressions, sociodemographic factors (age, race, education, and marital status) and self-rated health status are used as predictors in the model. In addition to the use of sample weights, the survey estimation programs in the Stata statistical program (Stata Corp., College Station, TX) are used to compute correct standard errors and associated significance levels for the logistic regressions (Eltinge and Sribney 1996).
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, which has most commonly been used to examine the preferences of older persons for care and support, is partially applicable to the preferences of older persons for health care decision makers. Consistent with previous research, which finds that children are the most frequently chosen helpers for persons without spouses (Penning 1990), unmarried persons with living children were most likely to select younger generation members as potential health care decision makers. Among persons with neither a spouse nor a living child, other relatives were most commonly chosen as both trusted health care decision makers and DPAHCs. In contrast, relatives other than a spouse or younger generation member were rarely chosen as preferred decision makers by those who had a spouse or who had living children. Consistent with the hierarchical compensatory model, these findings suggest that older persons tend to select spouses and younger generation members as potential surrogate decision makers, and turn to other relatives and nonrelatives only when these close family members are not available. Findings concerning the preferences for trusted decision makers and appointments of DPAHC among married persons with living children are less consistent with the hierarchical compensatory model. The model suggests that spouses, when available, should be the most commonly chosen decision makers for older persons. However, among respondents with both spouses and living children, members of the younger generation (children, children-in-law, and grandchildren) were more likely than spouses to be mentioned as persons they would trust to make health care decisions. Moreover, approximately one third of married persons with children selected both spouses and younger generation members as those they would trust to make decisions. Furthermore, among married persons with living children who had made a DPAHC appointment, members of the younger generation and spouses were selected in roughly equal proportions as DPAHCs. Taken together, these findings suggests that many older persons expect to move beyond exclusive reliance on spouses when making health care decisions in the future.
Although previous research suggests that the primary providers of care for older persons are spouses, the results from this study indicate that members of the younger generation (children, children-in-law, and grandchildren) are frequently mentioned as those whom older persons would trust to make health care decisions and to serve as DPAHCs. One explanation for these findings is that most caregiving tasks require close and continual proximity to the older person, and such proximity is typically provided by spouses rather than by younger generation members (Litwak 1985). Younger generation members may be more available as health care decision makers, because this is likely to be a short-term role and typically does not require ongoing and continual proximity to the older person. Consistent with this view, previous research suggests that older persons anticipate that members of the younger generation will make themselves available for consultation and discussion on health care matters even if they are not in close geographical proximity to the older person (High 1987). Older persons may also anticipate that their spouses will be deceased or incapacitated themselves at the time that such health care decisions are needed, and that members of the younger generation will therefore be better able to communicate with the health care system regarding their needs and preferences.
Consistent with previous research, this study found a higher likelihood of advance directive completion, including both living wills and DPAHCs, among White respondents compared with African American respondents. A number of factors have been proposed to explain the lower level of advance directive completion among African Americans, including distrust of the medical system, previous experience of being denied medical care, and a consequential fear that advance directives are a means of preventing them from receiving medical care to which they are entitled (Eleazer et al. 1996). With the advent of managed care, many health care providers have advocated advance directives are a way of potentially limiting the use of expensive health care procedures at the end of life. However, there has not been a corresponding emphasis on the potential of advance directives as mechanisms for ensuring that those patients who want to receive the most extensive care possible are able to do so. Because studies suggest that African Americans are more likely to prefer medical treatments that prolong life (Carlais, Davis, Wright, and Marcial 1993; Eleazer et al. 1996), greater encouragement of the use of advance directives as a means of either prolonging or limiting medical care at the end of life may encourage greater use of these documents. Interestingly, no significant racial differences were found in the likelihood of engaging in informal discussion of health care preferences. This finding suggests that, although many African Americans are reluctant to complete advance directives, they may be more open to the possibility of engaging in informal discussions of health care preferences.
Like previous studies (e.g., Stelter et al. 1992), this study found a greater rate of advance directive completion among those with higher rather than lower levels of educational attainment. Many older persons have difficulty understanding the technical language in written material on advance directives (Gamble, McDonald, and Lichstein 1991), and those with lower levels of education are likely to need additional interventions in order to promote greater knowledge and use of these documents. One strategy is the use of one of the many educational videos that have been developed in recent years to explain and promote the use of advance directives (Foundation for Informed Medical Decison Making 1998; Herb and Dubler 1990; Daitz, Ulene, & Gibson, 1994). Many of these videos, in addition to providing clear explanations of advance directive documents, include stories by older persons and their family members in which they recount actual experiences of making health care decisions on behalf of the older persons who were unable to participate. These videos, which can be used in outpatient clinics, community-based gatherings, or in an older person's own home, may be particularly useful for older persons who have difficulty reading and understanding the written materials on advance directives that are most commonly available in health care settings.
This study found that both informal discussion of health care preferences and completion of formal advance directives were more common among unmarried persons who had living children than among married persons with children. Married persons may assume that their spouses know their health care preferences, while unmarried persons may recognize the importance of direct communication of health care wishes through informal discussion and/or advance directives. Alternatively, children of married older persons may not engage in informal discussions of health care preferences or encourage completion of advanced directives because they assume that such issues will be discussed between their parents. Furthermore, children of older persons may not feel that it is necessary or appropriate to discuss these issues if parents' spouses are available. Greater recognition is needed by health care providers of the important role played by the younger generation in making health care decisions for older persons. Practitioners should make greater efforts to include younger generation members in discussions concerning health care decisions and advance care planning.
Several limitations of the current research should be noted. A first limitation is that the category "younger generation member" includes several types of family members, including children, children-in-law, and grandchildren. The greater number of potential persons included in the younger generation category increases the likelihood that younger generation members will be chosen as either health care decision makers or DPAHCs. Because of the way in which the questions concerning children are coded in the AHEAD module used for this study, it is not possible to specify preferences for different types of younger generation members (e.g., child, grandchild, stepchild). Such data are needed in order to obtain more information about the preferences of older persons for health care decision makers.
A second limitation is that the data are based on self-reports of older persons concerning advance directive completion. No data is available concerning whether advance directives have been documented according to legal guidelines in individual states, or the extent to which they are accurately recorded and available to health care providers. Because respondents were asked about the presence of "written instructions" but not specifically about living wills, it is possible that some advance directives documented in this study consist of informal written instructions rather than formally executed living wills.
A third limitation of this study is that the data are based on self-reports of informal discussions of health care preferences. Some evidence from research on elderly parent–adult child dyads suggests that adult children are more likely to report having such discussions than are older persons themselves (Cicirelli 1992). Because adult children were not asked a similar set of questions in the AHEAD survey module, it is not possible to examine the extent of congruence between reports of older persons and their adult children concerning whether informal discussions have taken place.
The results of this study suggest a number of potential areas for future research. First, more research is needed on the factors that predict the likelihood of having informal discussions of health care wishes in the event that older persons are unable to make such decisions for themselves. As in previous studies (Elpern et al. 1993), this study found that informal communication was the most common means of expressing health care preferences. However, more information is needed on the factors that predict the likelihood of engaging in such discussions. Race and educational attainment, which have been found to be predictive of advance directive completion in previous studies, were unrelated to informal discussion, suggesting the need for additional examination of factors that facilitate or impede informal discussion. Such factors may include the role of health beliefs, the extent of contact with the medical care system, and perceptions of the abilities and competencies of various family members on issues related to medical decision making. In addition, more research is needed on the types of issues covered in these informal discussions, as well as the context and process by which these conversations are initiated with family members and other potential health care surrogates.
In future studies, it would be useful to have an additional question in which respondents are asked to indicate the person they would most prefer to make health care decisions if they were unable to do so themselves. In this study, the preferences of older persons for health care decision makers were defined in terms of whom they would trust to make health care decisions. Respondents were not specifically asked to indicate their hierarchical preferences for health care surrogates and were instead instructed to list all potential categories of persons (e.g., spouse, child, relative) whom they would trust to make such decisions. Such information would be useful in better determining whether the health care preferences of older adults are consistent with the hierarchical model. More research is also needed concerning the process by which older persons make decisions regarding health care decision makers and their reasons for choosing particular family members as surrogates.
More information is also needed on the extent of informal discussion concerning health care preferences in the event of decisional incapacity. The conversations could be quite limited, consisting of a passing remark about "not wanting to be a vegetable," or could be extensive, covering specific kinds of medical interventions that are desired or not desired under particular circumstances. It may be that education and race, which were not significantly related to informal discussions in the present study, may be related to the likelihood of engaging in these more extensive informal discussions of health care preferences.
Finally, this study has focused on expectations and planning among community-dwelling elders on issues related to end-of-life care. More information is needed on how informal discussions and advance directives are used to inform decision making at the end of life, based on documentation of the actual experiences of family members coping with the death of an older family member. Data on these issues can provide valuable information on how best to educate and assist older persons on issues related to advance care planning in ways that are consistent with individual needs and preferences.
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Acknowledgments |
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Received for publication May 27, 1999. Accepted for publication January 28, 2000.
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