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The Patient Self-Determination Act: an early look at implementation.

The Patient Self-Determination Act has provoked a proliferation of print and electronic materials to assist facilities to implement it. Numerous articles have appeared in medical, nursing, and health care administration journals. Organizations such as the American Hospital Association and Choice In Dying have prepared materials to assist patients, health care facilities, and community groups.[1]

Despite existing guidelines, facilities have enormous latitude as to how they implement the PSDA. They may use the act to improve patient decisonmaking, patient satisfaction, and quality of care. On the other hand, facilities may choose "paper compliance" with the act, thus having little or no influence on patient decision-making. If poorly implemented, the PSDA actually has the potentail to affect patient decisionmaking and quality of care negatively, especially for ethnic and racial minorities, the poor, the old, and those with dementia.

Three themes have emerged with regard to how facilities implement the PSDA. These are: advocacy (the degree to which institutions seek to encourage the execution of advance directives), assignment of duties (who is responsible for implementing the PSDA), and centrality (the extent to which the PSDA is central to an institution's mission to deliver quality care).[2]

Using these three themes as a basis of comparison, we report here on the experiences of voluntary hospitals and nursing homes in implementing the PSDA. In addition to reviewing the literature and speaking with people in several cities, in-depth interviews were conducted at each of seven facilities representing the five boroughs of New York City. Examination of the similarities and differences in the practices of these facilities is instructive in helping to frame the ongoing discussion as to the benefits and concerns surrounding the PSDA.

Advocacy

Advocacy has been described as the extent to which a facility encourages patients to execute advance directives.[3] Advocacy is a continuum that can include something as simple as giving all patients health care proxy forms and living wills, to a comprehensive education program aimed at encouraging patients to complete advance directives. The institution's intent in this regard is communicated in its overall mission statement, in its protocols for advance directives, and in the structure it selects for implementation of the PSDA.

Institutions vary substantially in the degree to which they advocate for completion of advance directives. Facilities distinguish between advocating for effective patient education and advocating in favor of executing directives. We observed one hospital which both philosophically and operationally advocates in favor of executing a health care proxy. Another hospital was committed to assuring that the "patient's point of view" is heard. Still other hospitals provided extensive patient education but stopped short of advocating that patients execute a directive. Lastly, several facilities we examined, while in compliance with the PSDA, have chosen to provide minimum levels of patient education and not to advocate in favor of advance directives.

Example 1. Anticipating the PSDA, the Patient Representative Department in Hospital A, a large medical center, conducted a pilot study to encourage patients to complete a health care proxy. When the PSDA was implemented, hospital administration endorsed the medical center's policy to "follow not only the letter of the law, but the spirit as well." Within forty-eight hours of admission, every patient (with the exception of certain units such as obstetrics, pediatrics, and psychiatry) is visited by one of twelve patient representatives. Patient representatives explain the proxy and offer assistance in complementing a proxy document. The representative makes copies of the proxy for the hospital record, the patient, and the family. Nurses, social workers, and physicians are taught to make referrals to patient representatives and can witness proxies on their own.

Example 2. The aim of Hospital B, a somewhat larger institution than Hospital A, is to ensure "compliance with the mandate of the PSDA." The admitting department has primary responsibility for implementation. Patients are asked whether they have an advance directive. Admission forms are stamped "yes," "no," or "wants more information." Nurses and social workers are also required to document whether a patient has an advance directive. This approach of "hitting patients over the head" is favored by the administration because it helps to insure that at least one person will document the patient's response about advance directives. Requests for further information are referred to a patient representative.

Facilities that actively encourage patients to execute directives take on a responsibility beyond that required by the PSDA.[4] Such an approach necessitates a multipronged institutional effort with strong support from central administration, an adequate number of personnel, and minimal institutional barriers--for example, no limitations as to who can witness documents. These facilities tend to enlist the aid of professional personnel, chaplains, and the media department.

Assignment of Duties

It is often assumed that attending physicians should initiate discussions with patients concerning advance directives.[5] This was not the procedure in any of the facilities we surveyed. In only one facility were physicians (house officers) even responsible for compliance with the PSDA, while another facility had tried to have house staff assume a similar responsibility, but without success. Physicians appear to agree with the American Medical Association that they should not be placed in the primary role of informing patients.[6]

In our survey, patient representatives had primary responsibility for implementing the PSDA in three facilities, the admitting department in one facility, and in two facilities responsibility was equally distributed among several disciplines. This distribution differs somewhat from that found in a convenience sample of fifty-seven facilities in New York City. Admitting clerks were responsible in eighteen facilities; patients representatives, physicians, and others in eighteen facilities; and nurses in fifteen acute-care hospitals and in all six nursing homes.

Patient representatives had a major role in implementing the PSDA in five of the seven institutions surveyed. We found differences in how these departments carry out this role. Some encourage patients to execute advance directives while others are more cautious. For example, one department encourages completion of proxies by patients who are orthodox Jews, while another does not broach the subject of proxies with orthodox patients. One director of a department of patient representatives cited a commonly held reservation[7]--that proxy appointments may misrepresent patients' wishes for their own advantage.

Example 1. At the insistence of the Vice President of Professional Services, himself a physician, in this 500-bed community hospital with academic affiliations, house staff have the "burden of responsibility" for implementing the PSDA. All patients receive written information on advance directives on admission. As part of their admitting history, house officers, who receive information on advance directives from the sole patient representative, ask patients if they have an advance directive. If the patient requests, house staff can assist patients to complete a directive or can make a referral to the patient representative.

While the patient representative characterized the house staff as initially resentful, angry, and uncomfortable about beginning the discussions, these reactions decreased as the physicians gained experience talking with patients. The Department of Utilization Review monitors compliance by reviewing the relevant portion of the physician's admission assessment. In the summer of 1991 compliance was thought to exceed 50 percent. Citations are sent to physicians with low compliance through the Department of Medical Education.

Example 2. In this medical center a computerized management information system is integral to the implementation of the PSDA. The admitting department inquries about directives and supplies written information to patients. The admitting department's mandatory computer screens require input of data on each patient. The program generates a list of patients who need to be seen by a patient representative, either because they requested further information or because they were not seen in admitting. The patient representative has primary responsibility for assisting patients to execute a document.

Clearly, who is responsible influences how the PSDA is implemented. One drawback in assigning this responsibility to the admissions department is that health providers come to think of the PSDA as focused on one "moment in time" solely associated with the "admissions process."[8] As a result, clinical personnel may fail to address the process of decision-making that needs to go on over the course of the hospital stay. Assigning responsibility to nurses and physicians increases the involvment of clinical personnel. The added advantage of assigning responsibility to house staff is that it increases the likelihood that, when they complete their training, they will discuss advance directives with patients prior to their entering the hospital.

Most facilities differentiated between responsibility for informing and responsibility for execution of documents. While many disciplines might be involved in informing patients, responsibility for executing directives usually reverted to a patient representative. Citing a potential conflict of interest, some hospitals prohibit nurses and social workers from witnessing documents, while others allow nurses and social workers both to witness and to help patients complete their documents.

In our survey, each facility had a blanket policy regarding who had responsibility for implementing the PSDA. While this approach meets bureaucratic goals, it may fail to take into account the individual needs of patients and providers. A competing model would be to assign responsibility for discussing advance directives to the health care provider who most needs the information and within whose practice and sphere of competency the decision best fits.[9] For example, while physicians might logically initiate discussions about advance directives in intensive care units, in nursing homes and home care this authority might more appropriately fall to nurses.

We observed that while diffusing implementation among many health professionals assures compliance with the law, it may hamper any one group from taking responsibility for fully practicing the PSDA. In our small sample, assigning primary responsibility to one discipline, either patient representative or nurse, seemed to improve a facility's effectiveness in communicating information about advance directives to patients, as evidenced by the number of completed directives.

Even in those facilities that took great care to reach all patients, we were struck with the lack of personnel available to answer patients' and families' questions during the evening hours and on weekends (although one facility had patient representatives on duty seven days a week). Nurses working evenings are often called on to allay patients' anxiety about information they received at the time of admission, and to clarify documents. Yet in our survey, many nurses had received only minimal instruction about the PSDA. In several facilities patient representatives reported a backlog on Mondays of referrals from patients wanting more information about advance directives. Delays of this sort might be avoided if nurses were better informed.

The procedures we observed can be contrasted with the model used at the University Hospital of Case Western Reserve in Cleveland, where nurses have primary responsibility for implementing the PSDA. All nurses receive two to three hours of instruction, which includes didactic content and role playing. Nurses can then respond to patients' and families' questions at any time of the day or night.[10]

We did not gather specific information as to how long it takes to inform patients about advance directives or to assist in execution of documents. Susan M. Wolf and colleagues cite the time and special training required as a disincentive to physician-patient discussions about advance directives. Some facilities confirmed that insufficient personnel was a major reason why they had not taken a more active role in encouraging patients to complete directives. The most aggressive facility in assisting patients to execute directives also had the largest number of personnel specifically assigned to implement the PSDA.

Finally, facilities have adopted different procedures to deal with institutional transfers of patients. Most facilities fully reassess the status of patients' advance directives during every readmission, even if only one or two days have elapsed since the last admission. One hospital maintains documents on file and, with the patient's permission, places the document in the medical record at the time of readmission. Nursing homes are unclear as to whether each patient's DNR status needs to be reassessed following a direct admission from a hospital, and whether the nursing home can accept a document completed at another institution.

Centrality

According to Fenella Rouse, the underlying assumption of the PSDA is that "if informed of their rights, many more people will take advantage of them, and that if actively involved in the decisions made about medical care, more people will get care that is responsive to their needs. Such care will, by definition, be better, and . . . it was thought may even be cheaper."[11] The PSDA thus provides an institution with a significant opportunity to rethink the full scope of activities that can foster optimum patient care.[12]

The issue of centrality can be seen in variations in practices among facilities. For example, some facilities distribute sample directives to all patients, while others only offer such documents if requested. Some place a copy of the directive in a specially designated section of the medical record while others flag the record to indicate that the patient has completed a document but do not actually place a copy of the document in the record.

Perhaps the best way to ascertain the centrality of the PSDA to the overall goals of the organization is to examine the amount of institutional funding devoted to patient, provider, and community education. The PSDA establishes only the minimum standard of educational activity, allocating no federal funds for this purpose. Thus, allocation of institutional resources is indicative of the degree to which issues of patient autonomy are central to the institution's overall mission.

The education of physicians is instructive in this regard. For example, at a hospital that expended extensive resources to implement the PSDA, every physician received a letter outlining the institution's policy for implementation, and house staff receive ongoing, regularly scheduled in-service training. A tracking system determining which hospital representative has spoken with patients about advance directives is incorporated into the hospital-wide management information system. Completed documents are placed in the medical record. Cues for physicians updating information are regularly highlighted on the face screen, and patient representatives notify physicians when a patient executes a proxy or living will. In contrast, in a hospital where primary responsibility for implementing the PSDA rests with the admissions office, house staff training consists of a pamphlet. Medical records are flagged if the patient has a directive, but directives are not placed in the medical record.

In addition to staff education, several facilities have focused on community education in an attempt to encourage completion of directives prior to hospitalization. All personnel with whom we spoke agreed that admission is a poor time to discuss advance directives. Several people mentioned that patients worry that information about their condition is being withheld when someone asks them whether they have a living will or proxy. In one hospital where the patient representative department offices are located outside the hospital, the department works with community groups to educate people in the community about advance directives. A second hospital is working with the clinics and ambulatory practices to increase patient awareness.

The facilities we surveyed cited difficulties in implementing the PSDA in relationship to unresponsive patients, patients in ICUs, the cognitively impaired, and patients with psychiatric disorders. The PSDA itself is silent on the responsibilities of a health care institution with respect to incompetent patients.[13] A new study by the New York State Task Force on Life and the Law, When Others Must Choose, may help to clarify policies in that state for patients who have not signed a health care proxy or left no clear guidance about their treatment wishes.

The Impact of the PSDA

We were unable to obtain definitive statistics as to the number of people who enter a facility with an advance directive or who execute a document while in the hospital. Only one hospital surveyed has a management information system capable of retrospectively retrieving such data.

Some facilities were able to provide an approximation of the number of patients they assist in executing advance directives. Since implementing the PSDA, two hospitals that encourage patients to execute a directive report an increase in the number of patients who indeed do so while in the hospital. The hospital with the most far-ranging program reported assisting over 700 people to execute a health care proxy in the first six months of 1992. The second hospital reported that twelve to fifteen patients per week are assisted in executing a proxy, living will, or DNR order--at least three to four times more than before the PSDA. In contrast, in a hospital where the admitting department is responsible for implementing the PSDA, in the first six months of 1992 the patient representative department received approximately six referrals to help patients execute an advance directive. In the one nursing home, 40 percent of residents have a written directive. Residents without directives are most often those with cognitive impairments. The assumption on the part of nursing home personnel that patients transferred from the hospital would be well informed regarding directives due to the PSDA has not been substantiated.

In one facility, personnel mentioned that withdrawing treatments (feeding tubes, for example) in accordance with patients' wishes is done more easily because of the PSDA. Rouse rightly points out that honoring patients' decisions has implications both for quality of care and for cost. A recent study of 200 patients found no difference in frequency of CPR, frequency of DNR orders, or total medical charges between patients who were and were not given an opportunity to sign a durable power of attorney.[14] Our survey did not set out to determine the monetary consequences of the PSDA, but the experience of one hospital in New York City illustrates the act's potential to influence hospital costs. The hospital has hypothesized that its recent decrease in charges, in the absence of a change in how ill its patients are, may be due to very sick hospitalized patients declining diagnostic tests or forgoing treatments that involve expensive technology. There might, for example, be a decrease in the number of tracheostomies because some patients now choose to forgo mechanical ventilation.

In summary, this early look suggests a range of responses to the PSDA on the part of health care facilities. Such a range is consistent with the intent of the PSDA, which was to allow institutions a wide latitude in both interpretation of the act and in selecting the most appropriate human resources to bear responsibility for its implementation.

While the act may not resolve complex issues regarding advance directives, many institutions see it as an opportunity to promote patient decisionmaking. Unfortunately, few facilities have the capability to assess one of the PSDA's most important outcomes--the extent to which the act stimulates people to complete and advance directive prior to or following the use of a health care facility.

[Mathy Mezey is the Independence Foundation Professor of Nursing Education, division of nursing, New York University, New York, N.Y.; Beth Latimer is a master's candidate, division of nursing, New York University.]

References

[1.] Choice In Dying, Inc., Advance Directives & Community Education (New York: Choice In Dying, 1992).

[2.] Fred H. Cate & Barbara A. Gill, The Patient Self-Determination Act: Implementation Issues and Opportunities (Chicago: The Annenberg Washington Program in Communications Policy Studies of Northwestern University, 1991), p. 16.

[3.] Cate and Gill, Patient Self-Determination Act, p. 16.

[4.] Ruth B. Purtilo, "Institutional Quandaries," in "Practicing the PSDA," special supplement, Hastings Center Report 21, no. 5 (1991): S13-S14, at S13.

[5.] Susan M. Wolf et al., "Sources of Concern about the Patient Self-Determination Act," NEJM 325 (5 December 1991): 1666-71; Cate and Gill, Patient Self-Determination Act, p. 16.

[6.] Elizabeth Leibold McCloskey, "The Spirit of the PSDA," in "Practicing the PSDA," special supplement, Hastings Center Report 21, no. 5 (1991):S14-S15, at S15.

[7.] Wolf et al., "Sources of Concern," p. 1669.

[8.] Cate and Gill, Patient Self-Determination Act, p. 23.

[9.] Mezey et al., "The Patient Self-Determination Act: Sources of Concern for Nurses," Nursing and Health Care, forth-coming; Elizabeth E. Theis, "Ethical Issues: A Nursing Perspective," NEJM 315 (1986): 122-24.

[10.] Stuart J. Youngner, personal communication.

[11.] Fenella Rouse, "Patients, Providers, and the PSDA," in "Practicing the PSDA," special supplement, Hastings Center Report 21, no. 5 (1991):S2-S3, at S2.

[12.] Purtilo, "Institutional Quandaries," p. S13.

[13.] McCloskey, "The Spirit of the PSDA," p. S14.

[14.] Lawrence J. Schneiderman et al., "The Effects of Offering Advance Directives on Medical Treatments and Costs," Annals of Internal Medicine 117 (1992):599-606.
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Title Annotation:Giving Life to Patient Self-Determination
Author:Mezey, Mathy; Latimer, Beth
Publication:The Hastings Center Report
Date:Jan 1, 1993
Words:3393
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