- Email: [email protected]
The patient self-determination act: Sources of concern for nurses
&k&y
t%‘kZey,
Lois K. Evans, &hTI
D. GOkib,
EdD, FAAN DNSC,
FAAN
MEd, RNC
Elizabeth Murphy, MA, RN, CNAA Gtadys 6. White, Pho, RN
he Patient Self-Determination Act (PSDA), which went into effect December 1, 1991, pertains to all healthcare institutions receiving Medicare or Medicaid funds.’ The law reuuires that every individual receiving health care be informed in writing of the right under state law to make decisions about his or her health care, including the right to refuse medical and surgical care and the right to initiate written advance directives. Hospitals and nursing homes must make this information available at the time of admission; Health Maintenance Organizations (HMOs), at the time of enrollment; hospices, when care is first received; and home care NURS 04TLooK 1994;42:3@8. Cq@$@t * 1994 by Msby-Yepr 002996~~94/$1.00 + .lO a/
agencies, before the patient comes un der an agency’s care. Institutions must document advance directives in the person’s medical record and ensure compliance with state law regarding advance directives. The PSDA requires health care institutions to establish mechanisms for disseminating information to patients and to designate personnel responsible for discussing advance directives.‘] ’ They must maintain pertinent written policies and procedures and must provide staff and community education on advance directives. l’ 2-A sample ppblic information document suggested by Health Care Financing Administration and materials from the Arqeriean Hospital Association are useful in disseminating uniform information to patients and fam&es~(qee p&&c information ~docum&& @q+& by
Health-Care Financing Administration in box). The statute specifically prohibits institutions from making care conditional on whether or not patientshave advance directives or otherwise discriminating against theni on that b% sis.’ Nevertheless, the intent of the PSDA is to encourage adults to complete written advance dire&ves, either a living will or a durable power of attorney (health czrreproxy). Living wills are documents in which persons specify their preferences to~~o@ent to or to forgo treatment in the ev&uf iif future
incompetence or terrnjrsaf ihness. A dumblti power of attorney is a doeu ment appointing a proxy -decision maker in the event of future ~incompe tence. Nurses are among ,severz& health care professionals who h$ve $primary responsibility to [email protected] infqmed decision making, incl.u#rg. but not birq&sl to advance dir&tives.3;5 Tog&& with physiciar~~.nu+es funcz
tion in the “narrow passageway” to patients.” Thus the American Nurses Association’s Position Statement on Nursing and the Patient Self-Determination Act recommends that questions about advance directives be part of the nursing admission assessment. For patients (and proxies or surrogates) who wish to complet:e advance directives, nurses have a responsibility to ensure that patients, (1) have access to the knowledge on which to base a treatment decision, (2) have clearly expressed their decision and desires, and (3) receive treat:ment in accord with their expressed preferences.3 There is evidence that nurses are the health care providers most likely to implement the PSDA. In a convenience sample of 78 hospitals, nursing homes, and home care agencies in New York City and Chicago, nurses were responsible for implementation of the PSDA
Nurses are educated to expect patients to make ,health care decisions and to advocate autonomlous patient decision
NURSING OUTLOOK
JANUARY/FEBRUARY
Vance directives remain. The concerns of physicians have been addressed in two recent articles.8, g Nurses’ concerns about advance directives overlap somewhat with those of physicians. There are, however, unique aspects about the patient-nurse relationship and the nurse-physician relationship that raise a different set of issues about advance directives from nursing’s perspective. The purposes of this article are to: (1) identify the circumstances under which nurses have unique concerns about advance directives, (2) explore these concerns within the practice framework of nursing, and (3) when possible, make recommendations for resolving concerns of nurses.
CONCERN 1: UNCERTAINTY ABOUT THE ROLE OF NURSES IN DISCUSSING ADVANCE DIRECTIVES By virtue of their close contact with patients and family members or significant others in acute care and other health care settings, nurses encounter patients who want to talk about advance directives. Some patients overtly express such a desire. Others ask indirect questions that suggest that they have questions about advance directives and treatment decisions. It is not unusual to encounter older patients who want to appoint a health care proxy but who have no living relatives or friends. In such situations, patients may look to nurses to fill this need. At other times, a nurse may believe that a patient’s condition warrants a discussion about advance directives. Nurses often find themselves in uncertain and ambiguous positions with respect to their prerogative to discuss advance directives with patients or family members. On the one hand, they feel a responsibility to initiate a discussion or at the very least to respond to questions. On the other hand, they are hampered by unclear authority as to their role in discussing advance directives with patients. This is especially true if hospital policy is not
1994
clear about nurses’ rights to talk with patients about advance directives or if a particular physician is known to be hostile to the idea of patient participation in decision-making. As employees, nurses are bound by formal or informal policies, which they interpret (rightly or wrongly) as limiting their legal authority, for example, the authority to counteract the actions or omissions of physicians or the authority to witness an advance directive.
The Practice Nurses
Framework
of
By virtue of education and practice, nurses have clear expectations about patients as decision-makers. Nurses are educated to expect patients to make health care decisions and to advocate for autonomous patient decision making. Nurses are also taught that, although they may temporarily perform aspects of care, for example bathing and feeding, during an episode of illness, this autonomy reverts to patients as quickly as possible.10 Although physicians as a group are ambivalent about patients asdecision makers” and rarely initiate discussions about such decisions,12 nurses expect to help patients (and family members or significant others) to develop and exercise self-determination.3, 4~l3
Recommendations Currently, less than 10% of patients have completed advance directives.8 Ideally, efforts to explain and to encourage completion of advance directives should target persons before they enter a hospital or nursing home. The PSDA recognizes this goal by stipulating that health care facilities conduct community education to disseminate information about advance directives, Unfortunately, because community education is not reimbursed, health care facilities are unlikely to initiate extensive community education programs. Thus the major benefits resulting from the PSDA will, in all likelihood, occur as a result of information
Mezey et al.
31
dissemination at the time of admission advance directives is done by nurses as to a health care facility. part of their admission assessment.” At Hospitals and nursing homes need to University Hospital in Cleveland, for develop explicit procedures for imple- example, nurses have received extenmentation of the PSDA, including a sive training and are responsible for clear delineation of responsibility for implementing the PSDA throughout dissemination of information and for the hospital. In these instances, nurses assisting patients who want to com- often have authority to assist patients plete an advance directive. In accor- in completing an advance directive, dance with ANA recommendations, in including the authority to witness disome hospitals the initial discussion of rectives. 32
Mezeyet
al.
VaW
If a social worker or patient representative is responsible for disseminating information about the PSDA, the institution must assure that appropriate personnel are available to participate infollow-up discussions when patients and family membersask additional questions. Such discu$ions should provide a mechanism for exploring patients’ needs for substantive information, which does not just con 42
l
M&RBER
1
IWRSlliKi
OUTLOOK
sist of “paper compliance” related to the PSDA.4~l4 Ideally, because such questions often arise in the course of providing care or in the evening or on weekends when patient representatives or social workers rnay not be available, nurses will respond to such questions, including requests for assistance in filling out documents. Most hospitals have a blanket policy for implementation of the PSDA that applies throughout the institution. An alternate approach might be to allow the urgency of a simation to dictate the type of discussion and the appropriate provider. Responsibility for discussions with patients about advance directives NURSING OUTLOOK
JANUARY/FEBRUARY
would thus fall to the provider who most needs the information and within whose practice and sphere of competence the decision best fits.15 For example, the admissions department or patient representatives might logically distribute information about advance directives in nonspecialty units in acute care hospitals, where information can be general and the likelihood of need for an advance directive is remote. In specialty units, such as coronary care units, nurses might more appropriately approach patients, because in these units patients may have a more compelling and immediate need for education about advance directives. 1994
A unique feature of the PSDA is that it makes institutions legally responsible for assuring that patients are informed of their right to complete advance directives; such decisions are no longer solely the purview of the physician-patient relationship. The PSDA mandates that institutions educate staff and provide a forum for discussion of issues that may become apparent as a result of its implementation. Thus regardless of whom within the organization is designated to implement the PSDA, nurses have a responsibility to assure that the institution complies with the conditions of the PSDA. This responsibility can be met Mezey et al.
33
through case reviews, ethics rounds, quality assurance measures, such as ascertaining patient and family satisfaction with the information they are given, and determining professional staff satisfaction with the implementation process. Although not mandated by the PSDA, health care institutions should be encouraged to track the number of persons who complete advance directives. Institutional surveys would provide insight into reasons that patients are reluctant to complete such documents. Such forms of ongoing evaluation can serve as the basis for needed revisions of existing policies.
cmE;RN 2: WliETHfm AN A~VAWCE DlRECTlVE IS AN ACCURATE STA WHAT THE PATIHH WAWTS Some patients will have completed a living will or a durable power of attorney, which details their decisions about life-sustaining treatment before entering the facility or will complete such a document at the time of admission. Other patients, although they do not have written directives, may have strong feelings about treatments such as resuscitation or feeding tubes. Still other patients may not have formulated a clear decision before admission or may vacillate concerning a treatment decision. There is continuing concern that the setting, the circumstances of an admission, or an inaccurate understanding of the PSDA may unduly influence a patient to complete an advance directive or to express a decision either to consent to or to forgo treatment.4,” For example, although the PSDA specifically prohibits such activity, a 79-year-old man, less than 10 hours after bowel resection (and less than 24 hours after learning that he had cancer and an abdominal aortic aneurysm), was asked to “complete these forms” (a durable power of attorney). It is also conceivable that patients may question or change their minds about treatment preferences expressed during the course of an early and often
34
Nlezey et al.
brief interaction with a health cart provider. For example, there may bc reason to question whether an advance directive still holds when a patient is transferred to a different unit within the hospital or to another facility, Sirnilarly, there may bc concern that ;nl earlier directive of a patient who has regained decision-making capacity may no longer adequately reflect the patient’s current wishes. Unfortunately, the responsible health care provider may not always reassess such a patient’s preferences. As a consequence of their repeated and prolonged contact with patients, nurses may be aware of ambiguities, inaccuracies, or inconsistencies, which call into question whether patients have made informed decisions, Patients’ stated directives to consent to or to forego treatment, specified at one point in time, may conflict with information obtained later or behavior observed during the course of ongoing relationships between patients and nurses. Nurses may have reason to question decisions made during a pcriod of stress, for example, decisions made hurriedly in the admitting department. In addition, patients may divulge information to nurses, which they withhold from others. We are aware of circumstances in which nurses learn that patients have a living will or have designated a health care proxy but have not disclosed this information to their physicians. Nurses may be unsure about how to respond in order to eliminate inaccuracies and misconceptions and to increase patients’ knowledge about treatment choices. In some situations, because of ambiguity about who is responsible for a patient’s primary care nurses do not know who to talk with about these inaccuracies and misconceptions. In hospitals, patients see several physicians, none (or all) of whom see themselves as having “primary” responsibility for a patient’s care. In teaching hospitals patients are often cared for by house staff who rotate on and off service. And finally, there may he uncertainty as to
what, if any, reformation about pa tients’ misconceptions should be documented in the medical record.
The Practice Nurses
Framework
of
In contrast to other health care professionals, nurses have relationships with patients that are often frequent, sustained, and intimate. Nurses thus have a unique pattern of communication with patients and family members or significant others. Althoughconcerned with the treatment decision per SC, many nurses rare equally concerned with helping patients think through the effects of a disease and its treatment on their overall function, As part of
this process, nurses seek assurances from patients that treatmenE decisions conform to patients’ wishes and values. Because they have opportunities for ongoing discussion and reflection with patients, nurses may be privy to concerns that patients may have about a previous decision, which they may not have shared with family members or other health care professionals.
Recammetndzrtion The I?SDA underscores that facilitat ing self-determination of patients with respect to end-of-life decisions is aprocess that includes evaluating char&s in patients’ perspectives and health states.” Patients need to fuliy under stand treatment options if they are to make informed decisions about
whether and how to complete written directives. Health care providers need both timely information as to patients’ treatment preferences and the means to determine whether decisions made by patients were fully informed and could be expected to endure over time. In this respect, the PSDA provides the opportunity for health care institutions to reorder their priorities to help nurses and physicians to identify their collaborative responsibilities in monitoring and responding to changes or ambiguities in patients’ ‘decision making. Unfortunately, most current education about the PSDA in hospitals and nursing homes is discipline-specific. Establishing ongoing interdisciplinary committees and work shops can provide vehicles for such interchange. When nurses are responsible for implementing the PSDA, institutions need a mechanism for informing all parties and ensuring that they adhere to this policy. Perhaps most importantly, nurses themselves must be fully informed about policies, state law, and the strengths and limitations of the various forms of advance directives. The role of resources within the institution, for example patient representatives, ethics committees, and risk managers, to respond to “morally troublesome” cases15 should be clearly delineated. Unitbased, interdisciplinary ethics rouncls or meetings can be helpful in this regard. The medical staff must be informed about the nature of nurses’ competencies and the extent of their legitimate authority. Finally, there should be ongoing discussion as to the process and procedures for documenting information in the medical record.9
CONCERN 3: WHETHER A PATIENT HAS f:lJLLY TAKEN INTO ACCOUNT THE CONSEQUENCES OF A TREATMENT DECISION BEFORE COMPLETING A WRITTEN DIRECTIVE Because they provide intimate personal care to patients, nurses, perhaps more
NURSING OUTLOOK
JANUARY/FEBRUARY
often than other health care professionals, are aware of the benefits and burdens of intrusive and painful procedures on patients’ everyday functions, the ability to eat, sleep, ambulate, express feelings and thoughts, and communicate with loved ones. Faced with implementing measures to control pain, for example, nurses are often aware of times when pain control falls short of its desired goal. Such situations occur in the case of patients with metastatic cancer or patients with sickle cell anemia who are in crisis. On the one hand, by virtue of being sensitized to the consequence of treatment decisions, nurses are confronted with patients whom they believe may have made choices to consent to treatment on the basis of incomplete consideration of the consequences of those decisions on the quality of their lives. Some patients, for example, fail to appreciate the degree to which respirators limit the ability to communicate with loved ones. On the other hand, nurses deal with situations in which decisions to forego treatment have resulted in underuse of comfort measures. The ANA in its position statements has affirmed that the use of comfort measures and other aspects of nursing care should not be neglected because of specific features of patients’ advance directives.3
The Practice Nurses
Framework
of
Nursing education emphasizes that effectiveness of medical management includes not only the ability to prolong life but also the degree to which treatment may affect the overall quality of life of patients and families.15J l6 Thus nurses are taught to help patients view a treatment choice through the prism of “the consequences of the decision for everyday life.” Nurses’ continued involvement with patients is less dependent on patients’ positive response to treatment and more dependent on their continued need for care.r’ Nurses actually increase their interactions with sicker
1994
or dying patients and their families. At such times, nurses’ contacts with patients assume increasing importance as they blend their scientific knowledge with the therapeutic use of self, caring, supporting, teaching, binding. Thus nurses, perhaps more than other health care providers, are aware of the negative consequences for patients of decisions to treat or not to treat during the terminal phase of illness. In contrast, physicians, seeing no further need for their medical skills, may subtly withdraw from interactions with terminally ill patients and their families. Unfortunately, the shift in emphasis with terminally ill patients from medical to nursing care often occurs without the overt acknowledgment or transfer of responsibility or authority from physicians to nurses.
Recommendations To make fully informed treatment decisions when completing a durable power of attorney or living will, patients must have sufficient information so that they can fully consider the effects of their decision on both their overall life expectancy and their general well-being. For this aspect of the PSDA to be fully implemented, nurses and physicians need to learn more about their differing emphasis on the “goals” of care. Assuring nurse-physician collaboration in counseling patients would go a long way to assure that patients have a realistic understanding of the consequences of their treatment decisions. One positive outcome of the PSDA would be increased acknowledgment by nurses and physicians regarding the various effects that patients’ treatment decisions have on their practice. Patients who choose to forego certain treatment options, such as advanced life support, may appropriately require fewer diagnostic tests and less frequent supervision by physicians but will continue to require complex nursing care for administration of comfort measures such as oxygenation, suctioning, and pain control.
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The responsibility for care to be provided when patients choose to consent to or to forego certain treatments, as well as decisions about who should communicate with patients and family members, need to be discussed and agreed to by members of all disciplines involved in the patient’s care and clearly communicated to patients and family members. Patients must be assured that they will not be abandoned. Similarly, nurses who shoulder the burden of care need both peer and administrative support.
~~TW !&TACT DECISCIQNMAKWG CAPACITY There are times when documented decisions inappropriately reflect families’ rather than patients’ decisions. Such a situation may occur when a proxy is called on to make a decision in the rush of an emergency admission but decision-making responsibility fails to revert to the patient after decision-making capacity has been regained. At other times, as in the case of elderly patients with poor vision or hearing or slowed response times, failure to conduct a complete assessment may lead to an incorrect conclusion that a patient lacks decision-making capacity. Situations in which family members’ decisions inappropriately take precedence over those of patients tend to be complex. Such patients may have fluctuating decision-making capacity, which is difficult to assess.Nurses may observe times when patients are sufficiently lucid to participate in decisions, but such times may be infrequent or occur at a time of day when no one is available to validate this finding. In situations of family-patient conflict over a decision or in which a patient suspects that his or her decision differs from that of the physician; for exam ple, when a patient wishes to forego treatment but knows that the family or
36 Mezey et al.
physician wants everything done, the patient may be afraid to write down his or her true treatment preference, At other times, a patient may be unaware that a treatment decision has been voiced on his or her behalf. For example, a patient may be unaware that a psychiatric consultation for a mental status determination is being conducted for the purpose of determining decision-making capacity. The PSDA is silent on the issue of patients who lack decision-making capacity and who have not completed an advance directive. Inevitably under such circumstances, health care providers turn to family members or significant others for immediate decisions. In most instances, the wishes expressed by family members acting as proxies or surrogates usually offer the best approximation of what patients would want for themselves under similar circumstances. ”
nomic status, language, ethmcity, cul* ture, and age.
Recommendations In conjunction with the PSDA mandate for education of health care professionals, nurses need to work with others within the institution to ensure that a mechanism for adequate assessment of patients’ decision-making capacity is in place. This is especially important for patients for whom English is not a first language, for the elderly, and for patients with disabilities that are likely to distort a cursory assessment of mental capacity. Attempting to evaluate patients’ decisionmaking capacity in situations of high stress, confusion, or crisis should be avoided unless absolutely necessary.4 Institutions may need to develop educational programs to help nurses and others to adequately document patients’ decision-making capacity. For example, one skill t~hat nurses and physicians often lack is the ability EO The Practice Framework of complete a comprehensive mental staNurses Although there are times when it is tus assessment.” If, for example, a nurse appropriate to seek decisions from fam- working in the evening observes what ily members, such decisions should she believes to be sound judgment on only be accepted when patients lack- the part of an elderly patient who is decision-making capacity. Because believed to lack decision-making canurses have more opportunity to talk pacity, administration of a reliable meawith both patients and family mem- sure of mental status would substanbers, they are often more likely than tially enhance such an observation. other health care professionals to have Similarly, knowledge about delirium an accurate appraisal of patients’ deci- and screening instruments to detect sion-making depression could assist in identifying capacities. Moreover, nursing education stresses the primacy patients whose decision-making capacof patient ~decision-making and the ity is potentially impaired by psychiatneed to be sensitive to the indepenric depression or delirium, rather than dence and interdependency of patients by dementia of organic origin. Issues of confidentiality. may comand families. Nurses may be aware of situations in pound situatioris in which nurses believe that a patient’s decision-making which a family decision inappropriately supersedes that of a patient who capacity has been wrongly-assessed or has decision-making capacity. Engle in which a family member’s d&ion hardt has observed that there is a disso- has wrongly taken precedence over nance when the persons involved in that of a patient. In such Gtuations., moral decisions lack “connectednurses should have access to consultaness.“‘” Patients may talk more freely tion with an ethics consultant or- an with nurses with whom they have ethics committee. Finally, a ~WJC~UTCZ shared bonds by virtue of socioeco-. needs to be in place whereby a nurse
can feel comfortable, within and across professions, communicating information that may call into question the adequacy of another professional’s initial or ongoing assessment of a patient’s decision-making capacity. CONCERN 5: \NHETHER AN ADVANCE DIRECTIVE IS BEING “RESPECTED” OR HONORED The PSDA mandates a notation in the medical record as to whether a patient has completed an advance directive, although the PSDA does not require that a copy of the directive be placed in the medical record. Nevertheless, there are situations in which a nurse becomes aware or suspects that, despite an advance directive, a patient’s decision is not being honored. In some instances, a patient’s written directive is not put into effect. More commonly, such a situation arises when a patient lacks a written directive but has verbally stated treatment preferences. Such a situation can also arise when a health care provider is uninformed or misinformed abc’ut the PSDA, state law, or documentation of advance directives in the facility. Failing to adequately ascertain or ignoring a patients’ treatment preferences can occur when the patient is a young adult, who is seen as lacking experience in making decisions. For example, a provider may not know that an 18-year-old is legally competent to com.plete an advance directive. Such a situation may also occur with an older person, whose decisions may be ignored in. favor of discussions with a family member.19 Practice Framework of Nurses When clearly expressed, either in writing or verbally, a patient’s wishes take precedence over .any other decision. According to the ANA Code for Nurses, nurses have a responsibility to patients to act when a professional colleague is not practicing appropriately.20 The code underscores nurses’ responsibility to safeguard individual clients and the general public when health care and
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safety are affected by incompetent, unethical, or illegal practice. The role of paternalism in health care and the idea that patient autonomy should be tempered by consideration of the role of families and of physicians has received extensive attention in the medical literature.21r22 Physician ambivalence about patient autonomy places nurses in the untenable “middle position” with respect to their relationships with colleagues and their role as patient advocates.23 In anger, some nurses lose their objectivity and purposely withhold information about patients’ decisions from physicians. More commonly, nurses fail to communicate information because of the incorrect assumption that they do not have the right to interfere with the patient-physician relationship. In the absence of clear guidelines, nurses who fail to see a role for themselves in ascertaining a patient’s treatment decisions or who perceive that such a role places them at risk professionally may respond superficially or not at all to conversations with a patient or family member about advance directives. Recommendations The PSDA provides an opportunity for health care facilities to develop clear policies regarding their expectations that health care professionals will come forward when they suspect that care is in violation of directives. The PSDA provides institutional support for mechanisms that address nurses’ concerns about conflicts between patients and family members or between patients and health care providers over health care decisions. By requiring institutions to inform patients of their right to complete advance directives and by mandating staff education, the PSDA assists nurses in this process. All providers need continuing information regarding state law and facility policies and expectations about advance directives. In summary, the PSDA offers a unique opportunity to inform patients
1994
of their rights to actively participate in health care decisions. In hospitals, nursing homes, and home care agencies, the responsibility for implementation of the PSDA often falls to nurses. It is thus important that nurses acknowledge all of the features of such a responsibility. Collaboration among health care professionals offers the best assurance that the PSDA will achieve its intended aim: informing patients of their right to express a treatment preference in advance so as to protect their autonomy should they lose future decision-making capacity. H
REFERENCES 1. Omnibus Budget Reconciliation Act of 1990. Pub L No. 101508 ( (4206,475l (codified in scattered sections of 42 USC., especially { {1395cc, 1396a (West Supp. 1991)). 2. The Patient Self Determination Act. Hastings Cent Rep 20 (Special Supplement), 1991. 3. ANA. Position statement on nursing and the Patients Self-determination Act. Washington ANA, 1992. 4. Weber G. Tips on implementing the Patient Self-determination Act. Nurs Health Care 1993;14:8691. 5. Myer C. ‘End-of-life’ care: patients’ choices, nurses challenges. Am J Nurs 1993;93,40-7. 6. Lynaugh J. Narrow passageways, nurses and physicians in conflict and concert since 1875. In King N, et al., eds. The physician as captain of the ship, a critical appraisal. Boston: D. Reidel, 198823-38. 7. Northwest Ethics Center for Veterans Health Care Newsletter. NECVHC (182-E) Seattle, VAMC, 1992 [1660 S. Columbia Way, Seattle WA 98108.1 8. Wolf SM, Boyle P, Callahan D, et al. Sources of concern about the Patient Self-Determination Act. N Engl J Med 1992,325,1666-71. 9. Greco PG, Schulman KA, Lavizzo-Mourey R, Hansen-Flaschen J. The Patients Selfdetermination Act and the future of advance directives. AnnInternMed 1991,115639-43. 10. Henderson V. The nature of nursing. New York: Macmillan, 1961, 11. Danis M, Southerland L, Garett J, et al. A prospective study of advance directives for life-sustaining care. N Engl J Med 1991, 324882-g. 12. Gamble E, McDonald P, Lichstein P. Knowledge, attitudes, and behavior of elderly persons regarding living wills. Arch Intern Med 1991;151:277-80. 13. Watts C, Cassel C. Extraordinary nutritional support: a case study and ethical analysis. J
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Am Gertatr Sot 1984,32,237-42. 14. Schwartz JK. Living ~111s and health cart proxlcs. nurse practice implications. Nurs Health Cart 1992,13,92-6 ii. Theis EC. Ethical issues, a nursing pcrspec tive N Engl J Med 1986,31.5 1222-4. 16. Haer E The feminist disdain tor nurslnp New York Times 23 Feb 1991. 17. Henncr I’, Wruhel J. The primary of cartng. Menlo Park, California, Addison-Wesley, 1989 18. Engelhardt H, Tristram J. The foundations of bioethics. New York, Oxford University l’res*, 1986. 19. Wilson S. Forum on ethical dilemmas. Am Nurs 1992.24(3): 12. 20. ANA Code for nurses with interpretive
tR
Mclaevet
al.
statements. Washmgtcm: ANA, 1986 Childress JF. WIICI sho~11~1 decide, paternal1sm In health cart New York Oxford Un: l’crslty l’rcs*, I USI. 22 tilgh D All ~1, t11., :arniLy extended autuu omy and cxpcct,itmns in surrogate hcdth cake decision-making Cerontolqqist 1 %Xx. 28(Supp1).46-5 I 23. Murphy I’. GettIn.< out of the middle [Edlto rial]. Am Nur, 1992;24(3)& 21
-MATHY MEZEY is the Independence Foundation Professor of Nursing Education at New York Un/versity in New York. LOIS K. EVANS is an associate
professor
the School of Nursing at the University of Pennsylvania in Philadelphia.
in
ZOLA D. GOLUB is an instructor in the Department of Education, Research and Devefopment at The Presbyterian Hospital in New York, New York. ELIZABETH MURPHY is the director of nursing at Mount Sinai Medica! Center in New York, New York. GLADYS B. WHITE is a consultqnt at the Center for the Prevention ot Substance Abuse, U.S. Department of Health- and Human Services.
t%‘kZey,
Lois K. Evans, &hTI
D. GOkib,
EdD, FAAN DNSC,
FAAN
MEd, RNC
Elizabeth Murphy, MA, RN, CNAA Gtadys 6. White, Pho, RN
he Patient Self-Determination Act (PSDA), which went into effect December 1, 1991, pertains to all healthcare institutions receiving Medicare or Medicaid funds.’ The law reuuires that every individual receiving health care be informed in writing of the right under state law to make decisions about his or her health care, including the right to refuse medical and surgical care and the right to initiate written advance directives. Hospitals and nursing homes must make this information available at the time of admission; Health Maintenance Organizations (HMOs), at the time of enrollment; hospices, when care is first received; and home care NURS 04TLooK 1994;42:3@8. Cq@$@t * 1994 by Msby-Yepr 002996~~94/$1.00 + .lO a/
agencies, before the patient comes un der an agency’s care. Institutions must document advance directives in the person’s medical record and ensure compliance with state law regarding advance directives. The PSDA requires health care institutions to establish mechanisms for disseminating information to patients and to designate personnel responsible for discussing advance directives.‘] ’ They must maintain pertinent written policies and procedures and must provide staff and community education on advance directives. l’ 2-A sample ppblic information document suggested by Health Care Financing Administration and materials from the Arqeriean Hospital Association are useful in disseminating uniform information to patients and fam&es~(qee p&&c information ~docum&& @q+& by
Health-Care Financing Administration in box). The statute specifically prohibits institutions from making care conditional on whether or not patientshave advance directives or otherwise discriminating against theni on that b% sis.’ Nevertheless, the intent of the PSDA is to encourage adults to complete written advance dire&ves, either a living will or a durable power of attorney (health czrreproxy). Living wills are documents in which persons specify their preferences to~~o@ent to or to forgo treatment in the ev&uf iif future
incompetence or terrnjrsaf ihness. A dumblti power of attorney is a doeu ment appointing a proxy -decision maker in the event of future ~incompe tence. Nurses are among ,severz& health care professionals who h$ve $primary responsibility to [email protected] infqmed decision making, incl.u#rg. but not birq&sl to advance dir&tives.3;5 Tog&& with physiciar~~.nu+es funcz
tion in the “narrow passageway” to patients.” Thus the American Nurses Association’s Position Statement on Nursing and the Patient Self-Determination Act recommends that questions about advance directives be part of the nursing admission assessment. For patients (and proxies or surrogates) who wish to complet:e advance directives, nurses have a responsibility to ensure that patients, (1) have access to the knowledge on which to base a treatment decision, (2) have clearly expressed their decision and desires, and (3) receive treat:ment in accord with their expressed preferences.3 There is evidence that nurses are the health care providers most likely to implement the PSDA. In a convenience sample of 78 hospitals, nursing homes, and home care agencies in New York City and Chicago, nurses were responsible for implementation of the PSDA
Nurses are educated to expect patients to make ,health care decisions and to advocate autonomlous patient decision
NURSING OUTLOOK
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Vance directives remain. The concerns of physicians have been addressed in two recent articles.8, g Nurses’ concerns about advance directives overlap somewhat with those of physicians. There are, however, unique aspects about the patient-nurse relationship and the nurse-physician relationship that raise a different set of issues about advance directives from nursing’s perspective. The purposes of this article are to: (1) identify the circumstances under which nurses have unique concerns about advance directives, (2) explore these concerns within the practice framework of nursing, and (3) when possible, make recommendations for resolving concerns of nurses.
CONCERN 1: UNCERTAINTY ABOUT THE ROLE OF NURSES IN DISCUSSING ADVANCE DIRECTIVES By virtue of their close contact with patients and family members or significant others in acute care and other health care settings, nurses encounter patients who want to talk about advance directives. Some patients overtly express such a desire. Others ask indirect questions that suggest that they have questions about advance directives and treatment decisions. It is not unusual to encounter older patients who want to appoint a health care proxy but who have no living relatives or friends. In such situations, patients may look to nurses to fill this need. At other times, a nurse may believe that a patient’s condition warrants a discussion about advance directives. Nurses often find themselves in uncertain and ambiguous positions with respect to their prerogative to discuss advance directives with patients or family members. On the one hand, they feel a responsibility to initiate a discussion or at the very least to respond to questions. On the other hand, they are hampered by unclear authority as to their role in discussing advance directives with patients. This is especially true if hospital policy is not
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clear about nurses’ rights to talk with patients about advance directives or if a particular physician is known to be hostile to the idea of patient participation in decision-making. As employees, nurses are bound by formal or informal policies, which they interpret (rightly or wrongly) as limiting their legal authority, for example, the authority to counteract the actions or omissions of physicians or the authority to witness an advance directive.
The Practice Nurses
Framework
of
By virtue of education and practice, nurses have clear expectations about patients as decision-makers. Nurses are educated to expect patients to make health care decisions and to advocate for autonomous patient decision making. Nurses are also taught that, although they may temporarily perform aspects of care, for example bathing and feeding, during an episode of illness, this autonomy reverts to patients as quickly as possible.10 Although physicians as a group are ambivalent about patients asdecision makers” and rarely initiate discussions about such decisions,12 nurses expect to help patients (and family members or significant others) to develop and exercise self-determination.3, 4~l3
Recommendations Currently, less than 10% of patients have completed advance directives.8 Ideally, efforts to explain and to encourage completion of advance directives should target persons before they enter a hospital or nursing home. The PSDA recognizes this goal by stipulating that health care facilities conduct community education to disseminate information about advance directives, Unfortunately, because community education is not reimbursed, health care facilities are unlikely to initiate extensive community education programs. Thus the major benefits resulting from the PSDA will, in all likelihood, occur as a result of information
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dissemination at the time of admission advance directives is done by nurses as to a health care facility. part of their admission assessment.” At Hospitals and nursing homes need to University Hospital in Cleveland, for develop explicit procedures for imple- example, nurses have received extenmentation of the PSDA, including a sive training and are responsible for clear delineation of responsibility for implementing the PSDA throughout dissemination of information and for the hospital. In these instances, nurses assisting patients who want to com- often have authority to assist patients plete an advance directive. In accor- in completing an advance directive, dance with ANA recommendations, in including the authority to witness disome hospitals the initial discussion of rectives. 32
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If a social worker or patient representative is responsible for disseminating information about the PSDA, the institution must assure that appropriate personnel are available to participate infollow-up discussions when patients and family membersask additional questions. Such discu$ions should provide a mechanism for exploring patients’ needs for substantive information, which does not just con 42
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sist of “paper compliance” related to the PSDA.4~l4 Ideally, because such questions often arise in the course of providing care or in the evening or on weekends when patient representatives or social workers rnay not be available, nurses will respond to such questions, including requests for assistance in filling out documents. Most hospitals have a blanket policy for implementation of the PSDA that applies throughout the institution. An alternate approach might be to allow the urgency of a simation to dictate the type of discussion and the appropriate provider. Responsibility for discussions with patients about advance directives NURSING OUTLOOK
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would thus fall to the provider who most needs the information and within whose practice and sphere of competence the decision best fits.15 For example, the admissions department or patient representatives might logically distribute information about advance directives in nonspecialty units in acute care hospitals, where information can be general and the likelihood of need for an advance directive is remote. In specialty units, such as coronary care units, nurses might more appropriately approach patients, because in these units patients may have a more compelling and immediate need for education about advance directives. 1994
A unique feature of the PSDA is that it makes institutions legally responsible for assuring that patients are informed of their right to complete advance directives; such decisions are no longer solely the purview of the physician-patient relationship. The PSDA mandates that institutions educate staff and provide a forum for discussion of issues that may become apparent as a result of its implementation. Thus regardless of whom within the organization is designated to implement the PSDA, nurses have a responsibility to assure that the institution complies with the conditions of the PSDA. This responsibility can be met Mezey et al.
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through case reviews, ethics rounds, quality assurance measures, such as ascertaining patient and family satisfaction with the information they are given, and determining professional staff satisfaction with the implementation process. Although not mandated by the PSDA, health care institutions should be encouraged to track the number of persons who complete advance directives. Institutional surveys would provide insight into reasons that patients are reluctant to complete such documents. Such forms of ongoing evaluation can serve as the basis for needed revisions of existing policies.
cmE;RN 2: WliETHfm AN A~VAWCE DlRECTlVE IS AN ACCURATE STA WHAT THE PATIHH WAWTS Some patients will have completed a living will or a durable power of attorney, which details their decisions about life-sustaining treatment before entering the facility or will complete such a document at the time of admission. Other patients, although they do not have written directives, may have strong feelings about treatments such as resuscitation or feeding tubes. Still other patients may not have formulated a clear decision before admission or may vacillate concerning a treatment decision. There is continuing concern that the setting, the circumstances of an admission, or an inaccurate understanding of the PSDA may unduly influence a patient to complete an advance directive or to express a decision either to consent to or to forgo treatment.4,” For example, although the PSDA specifically prohibits such activity, a 79-year-old man, less than 10 hours after bowel resection (and less than 24 hours after learning that he had cancer and an abdominal aortic aneurysm), was asked to “complete these forms” (a durable power of attorney). It is also conceivable that patients may question or change their minds about treatment preferences expressed during the course of an early and often
34
Nlezey et al.
brief interaction with a health cart provider. For example, there may bc reason to question whether an advance directive still holds when a patient is transferred to a different unit within the hospital or to another facility, Sirnilarly, there may bc concern that ;nl earlier directive of a patient who has regained decision-making capacity may no longer adequately reflect the patient’s current wishes. Unfortunately, the responsible health care provider may not always reassess such a patient’s preferences. As a consequence of their repeated and prolonged contact with patients, nurses may be aware of ambiguities, inaccuracies, or inconsistencies, which call into question whether patients have made informed decisions, Patients’ stated directives to consent to or to forego treatment, specified at one point in time, may conflict with information obtained later or behavior observed during the course of ongoing relationships between patients and nurses. Nurses may have reason to question decisions made during a pcriod of stress, for example, decisions made hurriedly in the admitting department. In addition, patients may divulge information to nurses, which they withhold from others. We are aware of circumstances in which nurses learn that patients have a living will or have designated a health care proxy but have not disclosed this information to their physicians. Nurses may be unsure about how to respond in order to eliminate inaccuracies and misconceptions and to increase patients’ knowledge about treatment choices. In some situations, because of ambiguity about who is responsible for a patient’s primary care nurses do not know who to talk with about these inaccuracies and misconceptions. In hospitals, patients see several physicians, none (or all) of whom see themselves as having “primary” responsibility for a patient’s care. In teaching hospitals patients are often cared for by house staff who rotate on and off service. And finally, there may he uncertainty as to
what, if any, reformation about pa tients’ misconceptions should be documented in the medical record.
The Practice Nurses
Framework
of
In contrast to other health care professionals, nurses have relationships with patients that are often frequent, sustained, and intimate. Nurses thus have a unique pattern of communication with patients and family members or significant others. Althoughconcerned with the treatment decision per SC, many nurses rare equally concerned with helping patients think through the effects of a disease and its treatment on their overall function, As part of
this process, nurses seek assurances from patients that treatmenE decisions conform to patients’ wishes and values. Because they have opportunities for ongoing discussion and reflection with patients, nurses may be privy to concerns that patients may have about a previous decision, which they may not have shared with family members or other health care professionals.
Recammetndzrtion The I?SDA underscores that facilitat ing self-determination of patients with respect to end-of-life decisions is aprocess that includes evaluating char&s in patients’ perspectives and health states.” Patients need to fuliy under stand treatment options if they are to make informed decisions about
whether and how to complete written directives. Health care providers need both timely information as to patients’ treatment preferences and the means to determine whether decisions made by patients were fully informed and could be expected to endure over time. In this respect, the PSDA provides the opportunity for health care institutions to reorder their priorities to help nurses and physicians to identify their collaborative responsibilities in monitoring and responding to changes or ambiguities in patients’ ‘decision making. Unfortunately, most current education about the PSDA in hospitals and nursing homes is discipline-specific. Establishing ongoing interdisciplinary committees and work shops can provide vehicles for such interchange. When nurses are responsible for implementing the PSDA, institutions need a mechanism for informing all parties and ensuring that they adhere to this policy. Perhaps most importantly, nurses themselves must be fully informed about policies, state law, and the strengths and limitations of the various forms of advance directives. The role of resources within the institution, for example patient representatives, ethics committees, and risk managers, to respond to “morally troublesome” cases15 should be clearly delineated. Unitbased, interdisciplinary ethics rouncls or meetings can be helpful in this regard. The medical staff must be informed about the nature of nurses’ competencies and the extent of their legitimate authority. Finally, there should be ongoing discussion as to the process and procedures for documenting information in the medical record.9
CONCERN 3: WHETHER A PATIENT HAS f:lJLLY TAKEN INTO ACCOUNT THE CONSEQUENCES OF A TREATMENT DECISION BEFORE COMPLETING A WRITTEN DIRECTIVE Because they provide intimate personal care to patients, nurses, perhaps more
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often than other health care professionals, are aware of the benefits and burdens of intrusive and painful procedures on patients’ everyday functions, the ability to eat, sleep, ambulate, express feelings and thoughts, and communicate with loved ones. Faced with implementing measures to control pain, for example, nurses are often aware of times when pain control falls short of its desired goal. Such situations occur in the case of patients with metastatic cancer or patients with sickle cell anemia who are in crisis. On the one hand, by virtue of being sensitized to the consequence of treatment decisions, nurses are confronted with patients whom they believe may have made choices to consent to treatment on the basis of incomplete consideration of the consequences of those decisions on the quality of their lives. Some patients, for example, fail to appreciate the degree to which respirators limit the ability to communicate with loved ones. On the other hand, nurses deal with situations in which decisions to forego treatment have resulted in underuse of comfort measures. The ANA in its position statements has affirmed that the use of comfort measures and other aspects of nursing care should not be neglected because of specific features of patients’ advance directives.3
The Practice Nurses
Framework
of
Nursing education emphasizes that effectiveness of medical management includes not only the ability to prolong life but also the degree to which treatment may affect the overall quality of life of patients and families.15J l6 Thus nurses are taught to help patients view a treatment choice through the prism of “the consequences of the decision for everyday life.” Nurses’ continued involvement with patients is less dependent on patients’ positive response to treatment and more dependent on their continued need for care.r’ Nurses actually increase their interactions with sicker
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or dying patients and their families. At such times, nurses’ contacts with patients assume increasing importance as they blend their scientific knowledge with the therapeutic use of self, caring, supporting, teaching, binding. Thus nurses, perhaps more than other health care providers, are aware of the negative consequences for patients of decisions to treat or not to treat during the terminal phase of illness. In contrast, physicians, seeing no further need for their medical skills, may subtly withdraw from interactions with terminally ill patients and their families. Unfortunately, the shift in emphasis with terminally ill patients from medical to nursing care often occurs without the overt acknowledgment or transfer of responsibility or authority from physicians to nurses.
Recommendations To make fully informed treatment decisions when completing a durable power of attorney or living will, patients must have sufficient information so that they can fully consider the effects of their decision on both their overall life expectancy and their general well-being. For this aspect of the PSDA to be fully implemented, nurses and physicians need to learn more about their differing emphasis on the “goals” of care. Assuring nurse-physician collaboration in counseling patients would go a long way to assure that patients have a realistic understanding of the consequences of their treatment decisions. One positive outcome of the PSDA would be increased acknowledgment by nurses and physicians regarding the various effects that patients’ treatment decisions have on their practice. Patients who choose to forego certain treatment options, such as advanced life support, may appropriately require fewer diagnostic tests and less frequent supervision by physicians but will continue to require complex nursing care for administration of comfort measures such as oxygenation, suctioning, and pain control.
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The responsibility for care to be provided when patients choose to consent to or to forego certain treatments, as well as decisions about who should communicate with patients and family members, need to be discussed and agreed to by members of all disciplines involved in the patient’s care and clearly communicated to patients and family members. Patients must be assured that they will not be abandoned. Similarly, nurses who shoulder the burden of care need both peer and administrative support.
~~TW !&TACT DECISCIQNMAKWG CAPACITY There are times when documented decisions inappropriately reflect families’ rather than patients’ decisions. Such a situation may occur when a proxy is called on to make a decision in the rush of an emergency admission but decision-making responsibility fails to revert to the patient after decision-making capacity has been regained. At other times, as in the case of elderly patients with poor vision or hearing or slowed response times, failure to conduct a complete assessment may lead to an incorrect conclusion that a patient lacks decision-making capacity. Situations in which family members’ decisions inappropriately take precedence over those of patients tend to be complex. Such patients may have fluctuating decision-making capacity, which is difficult to assess.Nurses may observe times when patients are sufficiently lucid to participate in decisions, but such times may be infrequent or occur at a time of day when no one is available to validate this finding. In situations of family-patient conflict over a decision or in which a patient suspects that his or her decision differs from that of the physician; for exam ple, when a patient wishes to forego treatment but knows that the family or
36 Mezey et al.
physician wants everything done, the patient may be afraid to write down his or her true treatment preference, At other times, a patient may be unaware that a treatment decision has been voiced on his or her behalf. For example, a patient may be unaware that a psychiatric consultation for a mental status determination is being conducted for the purpose of determining decision-making capacity. The PSDA is silent on the issue of patients who lack decision-making capacity and who have not completed an advance directive. Inevitably under such circumstances, health care providers turn to family members or significant others for immediate decisions. In most instances, the wishes expressed by family members acting as proxies or surrogates usually offer the best approximation of what patients would want for themselves under similar circumstances. ”
nomic status, language, ethmcity, cul* ture, and age.
Recommendations In conjunction with the PSDA mandate for education of health care professionals, nurses need to work with others within the institution to ensure that a mechanism for adequate assessment of patients’ decision-making capacity is in place. This is especially important for patients for whom English is not a first language, for the elderly, and for patients with disabilities that are likely to distort a cursory assessment of mental capacity. Attempting to evaluate patients’ decisionmaking capacity in situations of high stress, confusion, or crisis should be avoided unless absolutely necessary.4 Institutions may need to develop educational programs to help nurses and others to adequately document patients’ decision-making capacity. For example, one skill t~hat nurses and physicians often lack is the ability EO The Practice Framework of complete a comprehensive mental staNurses Although there are times when it is tus assessment.” If, for example, a nurse appropriate to seek decisions from fam- working in the evening observes what ily members, such decisions should she believes to be sound judgment on only be accepted when patients lack- the part of an elderly patient who is decision-making capacity. Because believed to lack decision-making canurses have more opportunity to talk pacity, administration of a reliable meawith both patients and family mem- sure of mental status would substanbers, they are often more likely than tially enhance such an observation. other health care professionals to have Similarly, knowledge about delirium an accurate appraisal of patients’ deci- and screening instruments to detect sion-making depression could assist in identifying capacities. Moreover, nursing education stresses the primacy patients whose decision-making capacof patient ~decision-making and the ity is potentially impaired by psychiatneed to be sensitive to the indepenric depression or delirium, rather than dence and interdependency of patients by dementia of organic origin. Issues of confidentiality. may comand families. Nurses may be aware of situations in pound situatioris in which nurses believe that a patient’s decision-making which a family decision inappropriately supersedes that of a patient who capacity has been wrongly-assessed or has decision-making capacity. Engle in which a family member’s d&ion hardt has observed that there is a disso- has wrongly taken precedence over nance when the persons involved in that of a patient. In such Gtuations., moral decisions lack “connectednurses should have access to consultaness.“‘” Patients may talk more freely tion with an ethics consultant or- an with nurses with whom they have ethics committee. Finally, a ~WJC~UTCZ shared bonds by virtue of socioeco-. needs to be in place whereby a nurse
can feel comfortable, within and across professions, communicating information that may call into question the adequacy of another professional’s initial or ongoing assessment of a patient’s decision-making capacity. CONCERN 5: \NHETHER AN ADVANCE DIRECTIVE IS BEING “RESPECTED” OR HONORED The PSDA mandates a notation in the medical record as to whether a patient has completed an advance directive, although the PSDA does not require that a copy of the directive be placed in the medical record. Nevertheless, there are situations in which a nurse becomes aware or suspects that, despite an advance directive, a patient’s decision is not being honored. In some instances, a patient’s written directive is not put into effect. More commonly, such a situation arises when a patient lacks a written directive but has verbally stated treatment preferences. Such a situation can also arise when a health care provider is uninformed or misinformed abc’ut the PSDA, state law, or documentation of advance directives in the facility. Failing to adequately ascertain or ignoring a patients’ treatment preferences can occur when the patient is a young adult, who is seen as lacking experience in making decisions. For example, a provider may not know that an 18-year-old is legally competent to com.plete an advance directive. Such a situation may also occur with an older person, whose decisions may be ignored in. favor of discussions with a family member.19 Practice Framework of Nurses When clearly expressed, either in writing or verbally, a patient’s wishes take precedence over .any other decision. According to the ANA Code for Nurses, nurses have a responsibility to patients to act when a professional colleague is not practicing appropriately.20 The code underscores nurses’ responsibility to safeguard individual clients and the general public when health care and
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safety are affected by incompetent, unethical, or illegal practice. The role of paternalism in health care and the idea that patient autonomy should be tempered by consideration of the role of families and of physicians has received extensive attention in the medical literature.21r22 Physician ambivalence about patient autonomy places nurses in the untenable “middle position” with respect to their relationships with colleagues and their role as patient advocates.23 In anger, some nurses lose their objectivity and purposely withhold information about patients’ decisions from physicians. More commonly, nurses fail to communicate information because of the incorrect assumption that they do not have the right to interfere with the patient-physician relationship. In the absence of clear guidelines, nurses who fail to see a role for themselves in ascertaining a patient’s treatment decisions or who perceive that such a role places them at risk professionally may respond superficially or not at all to conversations with a patient or family member about advance directives. Recommendations The PSDA provides an opportunity for health care facilities to develop clear policies regarding their expectations that health care professionals will come forward when they suspect that care is in violation of directives. The PSDA provides institutional support for mechanisms that address nurses’ concerns about conflicts between patients and family members or between patients and health care providers over health care decisions. By requiring institutions to inform patients of their right to complete advance directives and by mandating staff education, the PSDA assists nurses in this process. All providers need continuing information regarding state law and facility policies and expectations about advance directives. In summary, the PSDA offers a unique opportunity to inform patients
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of their rights to actively participate in health care decisions. In hospitals, nursing homes, and home care agencies, the responsibility for implementation of the PSDA often falls to nurses. It is thus important that nurses acknowledge all of the features of such a responsibility. Collaboration among health care professionals offers the best assurance that the PSDA will achieve its intended aim: informing patients of their right to express a treatment preference in advance so as to protect their autonomy should they lose future decision-making capacity. H
REFERENCES 1. Omnibus Budget Reconciliation Act of 1990. Pub L No. 101508 ( (4206,475l (codified in scattered sections of 42 USC., especially { {1395cc, 1396a (West Supp. 1991)). 2. The Patient Self Determination Act. Hastings Cent Rep 20 (Special Supplement), 1991. 3. ANA. Position statement on nursing and the Patients Self-determination Act. Washington ANA, 1992. 4. Weber G. Tips on implementing the Patient Self-determination Act. Nurs Health Care 1993;14:8691. 5. Myer C. ‘End-of-life’ care: patients’ choices, nurses challenges. Am J Nurs 1993;93,40-7. 6. Lynaugh J. Narrow passageways, nurses and physicians in conflict and concert since 1875. In King N, et al., eds. The physician as captain of the ship, a critical appraisal. Boston: D. Reidel, 198823-38. 7. Northwest Ethics Center for Veterans Health Care Newsletter. NECVHC (182-E) Seattle, VAMC, 1992 [1660 S. Columbia Way, Seattle WA 98108.1 8. Wolf SM, Boyle P, Callahan D, et al. Sources of concern about the Patient Self-Determination Act. N Engl J Med 1992,325,1666-71. 9. Greco PG, Schulman KA, Lavizzo-Mourey R, Hansen-Flaschen J. The Patients Selfdetermination Act and the future of advance directives. AnnInternMed 1991,115639-43. 10. Henderson V. The nature of nursing. New York: Macmillan, 1961, 11. Danis M, Southerland L, Garett J, et al. A prospective study of advance directives for life-sustaining care. N Engl J Med 1991, 324882-g. 12. Gamble E, McDonald P, Lichstein P. Knowledge, attitudes, and behavior of elderly persons regarding living wills. Arch Intern Med 1991;151:277-80. 13. Watts C, Cassel C. Extraordinary nutritional support: a case study and ethical analysis. J
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Am Gertatr Sot 1984,32,237-42. 14. Schwartz JK. Living ~111s and health cart proxlcs. nurse practice implications. Nurs Health Cart 1992,13,92-6 ii. Theis EC. Ethical issues, a nursing pcrspec tive N Engl J Med 1986,31.5 1222-4. 16. Haer E The feminist disdain tor nurslnp New York Times 23 Feb 1991. 17. Henncr I’, Wruhel J. The primary of cartng. Menlo Park, California, Addison-Wesley, 1989 18. Engelhardt H, Tristram J. The foundations of bioethics. New York, Oxford University l’res*, 1986. 19. Wilson S. Forum on ethical dilemmas. Am Nurs 1992.24(3): 12. 20. ANA Code for nurses with interpretive
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statements. Washmgtcm: ANA, 1986 Childress JF. WIICI sho~11~1 decide, paternal1sm In health cart New York Oxford Un: l’crslty l’rcs*, I USI. 22 tilgh D All ~1, t11., :arniLy extended autuu omy and cxpcct,itmns in surrogate hcdth cake decision-making Cerontolqqist 1 %Xx. 28(Supp1).46-5 I 23. Murphy I’. GettIn.< out of the middle [Edlto rial]. Am Nur, 1992;24(3)& 21
-MATHY MEZEY is the Independence Foundation Professor of Nursing Education at New York Un/versity in New York. LOIS K. EVANS is an associate
professor
the School of Nursing at the University of Pennsylvania in Philadelphia.
in
ZOLA D. GOLUB is an instructor in the Department of Education, Research and Devefopment at The Presbyterian Hospital in New York, New York. ELIZABETH MURPHY is the director of nursing at Mount Sinai Medica! Center in New York, New York. GLADYS B. WHITE is a consultqnt at the Center for the Prevention ot Substance Abuse, U.S. Department of Health- and Human Services.