Lawrence P. Ulrich, Ph.D.

From Manuscript;
The Patient Self-Determination Act: Meeting the Challenges in Patient Care
Copyright 1998 Lawrence P. Ulrich, Ph.D. 1. The Explicit Demands of the Law.

The requirements of the Patient Self-Determination Act are deceptively simple. In spite of their apparent simplicity they carry profound implications for the way healthcare is practiced. The law mandates that, in those healthcare institutions which receive Medicare or Medicaid funding, patients must be informed in writing upon admission of (1) their right to accept or refuse treatment, (2) their rights under existing state laws regarding advance directives, and (3) any policies which the institution has regarding the withholding or withdrawing of life-sustaining treatments.(1) The institutions are also required to engage in on-going educational activities for both their employees and the general public regarding the right to accept or refuse treatment and regarding the opportunity for drafting or signing advance directives.

The law was passed by Congress November 5, 1990 and went into effect December 1, 1991. It is based on the principles of informed consent. The law lays the foundation for the exercise of the patient's decision-making authority which will affect the course of treatment for all patients whether or not they possess decisional capacity. By extending the law to all healthcare institutions including hospitals, extended care facilities, hospices, HMOs, and home healthcare agencies virtually all individuals seeking healthcare will be covered. The only exceptions might be those few institutions where services are paid for directly by patients independently of government funding.

The law does not give any new rights to patients except the right to be informed of the stipulated matters at the time of admission to certain healthcare facilities. It generally reaffirms rights which patients already possess, such as the right to refuse treatment.(2) Unfortunately patients have not always been aware of these rights and for this reason they have all too often become victims of the decisions of others. The right of patients to receive adequate information about matters which will help them exercise their self-determination in healthcare practices is underscored by the new duty imposed upon healthcare facilities to provide specific information to them.

2. The Spirit of the Law.

All legislation must be understood both in terms of its explicit stipulations and its spirit. The spirit of a law constitutes its "soul." Compliance with the spirit (one might go so far as to say the intent) of a law demonstrates the effectiveness of the law in a comprehensive way and the commitment of the institutions which it binds. The intent of legislators often becomes a matter for serious consideration when challenges to a law or its implementation are addressed by the courts. The many debates over constitutional issues and the intent of the drafters of the Constitution bear witness to this phenomenon. The fact is that the intent behind a law is frequently opaque because it is undocumented. It only achieves partial clarity when the courts interpret the law. However, one can draw inferences about the intent of the Patient Self-Determination Act by recognizing that it was initiated by Senator John Danforth of Missouri at the time the situation of Nancy Cruzan was working its way through the courts in Missouri. It would seem that Senator Danforth and those who cosponsored the bill with him wanted to see that a case like Ms. Cruzan's would not happen again. Thus, the intent of the legislation seems to be the recognition and strengthening of the decisional authority of patients and their surrogates when making healthcare decisions of any sort whether they be in critical or non-critical situations.

In the Patient Self-Determination Act conformity to the letter of the law is quite simple. It can be accomplished, and often is, by simply giving patients the required notifications on paper with minimal oral presentations at the time of admission to the facility or program. When this approach is taken the same problems arise which have plagued the informed consent process for decades.

The informed consent process has all too frequently consisted of a description on paper of the medical intervention to be undertaken, a few words of additional explanation, the inquiry "Do you have any questions?" and a signature at the end of the printed form.(3) This procedure offers no assurance that the patient truly understands what will occur in the clinical encounter or what complications could arise from the interventions being considered. At times patients have used the inadequacy of the informed consent process as a legal argument in malpractice litigation.(4) All patients have to do is make a reasonable case that they did not truly understand the issues involved even though they signed the consent form. Thus, perfunctory informed consent procedures do not accomplish the purpose for which informed consent was intended, namely, to give content to the consent which is given thereby enhancing the authority of the decision-maker.(5)

If the spirit of the Patient Self-Determination Act is to be accomplished, more than perfunctory notification will be required and a more in depth understanding of the advantages of the law will be necessary. To put it simply, the Patient Self-Determination Act can enable patients to become better decision-makers in healthcare by accomplishing the following goals. (1) It provides clear ethical and legal recognition of the authority of patients and surrogates in the healthcare setting by affirming the control which they have in making many decisions about their lives and what transpires in them. (2) By identifying the decisional authority of patients and surrogates in the healthcare setting, it provides the opportunity to reflect upon what is important to them in selecting healthcare interventions. (3) It can reinforce the opportunity to choose those alternatives which will allow them to achieve their goals even after the onset of decisional incapacity. (4) Finally, it extends the ideals of political liberty into the daily decisions which individuals make about one of the most central and problematic areas of their lives, namely, the direction of their healthcare. Each of the notifications and requirements contribute to these purposes.

The right of patients to consent to or refuse treatments is the basis of everything to be found in this law. This is an application of the basic liberty which we all enjoy in a democratic society. It is a common misunderstanding that the initiation of medical treatments is automatic with the onset of a pathology. Conceptually speaking there is nothing in the concept of pathology that requires treatment. For this reason the initiation of treatment requires consent. The right to consent to treatment has a long history in the law.(6) While the right to refuse treatment is implied in the right to consent, taking the form of withholding consent,(7) it has only been extensively articulated in the law during the last 20 years.(8) In spite of the clear identification of this right in both ethics and the law, patients often think that they must accept treatments when they are offered. In a sense the offering of treatment often "defaults" to its initiation with very little actual reflective decision-making on the part of the patient involved. The Patient Self-Determination Act is intended to amplify autonomous decision-making by helping patients clearly understand that they can take control of their healthcare even to the point of refusing any or all treatments.

The Patient Self-Determination Act attempts to take advantage of the current climate of state initiatives authorizing the utilization of advance directives in healthcare decision-making. This extension of decision-making authority beyond the onset of decisional incapacity recognizes that patients have an interest in the healthcare decisions which affect them even if they are no longer able to participate in them in an active and direct way. Advance directives can enlarge the range of alternatives open to patients as they are considering the direction of their healthcare. This interest of patients in what happens to them after the onset of decisional incapacity had already been established by the courts prior to the passage of the law.(9)

Many patients have ideas about what direction they would like their healthcare to take if they are no longer able to make the decisions for themselves at the time the interventions are being considered. They express themselves on these matters in a variety of ways; some informally such as Karen Quinlan and Nancy Cruzan,(10) and others more formally as Brother Fox.(11) But without special information, these patients are often ignorant of the protection which states have offered them in these circumstances and the methods they can employ to maximize this protection. A great many individuals seem to be unaware that avenues are open to them which allow them to articulate their treatment wishes in anticipation of decisional incapacity.

The Patient Self-Determination Act seeks to empower patients by insuring that they receive the proper information so that they can consider the role of advance directives in their healthcare plans and make the appropriate decisions about them in view of their values and goals. Notification of the current state laws is only a first step in this extremely significant process. But it is an important beginning which opens the door to other ways of qualitatively increasing the authority which patients can exercise over their treatment decisions after the onset of decisional incapacity. Among the other issues related to advance directives is the encouragement of self-reflection by patients on the values and goals which guide their lives and which may ultimately guide the process of their dying, as well as specific treatment approaches they may want to specify or decline.

If patients are to be empowered to forego treatments it is essential that they understand any restrictions which healthcare institutions may have regarding this practice. The law's requirement that facilities provide information to patients related to their policies regarding the withholding or withdrawing of life-sustaining treatments is clearly directed to making patients better decision-makers. If patients find that a particular facility has certain restrictions on treatment alternatives flowing either from its mission or some other considerations, they can exercise greater control over where they will receive care. Knowledge prior to, or at the time of admission, may alert patients and their families to seek out a different facility if the one they have initially chosen is too restrictive of patient or family choices. This is particularly important if there will be a long term commitment between the patient and the institution.

The final requirement of the law goes well beyond notifications given to individual patients. It places an educational obligation on healthcare institutions. The institutions are required to have on-going educational programs to explain to their employees and members of the community their rights regarding consent to and refusal of treatments and the advance directive conditions in their state. The purpose of the educational requirement is to provide potential patients, i.e., every citizen, the opportunity to learn about the stipulations of the Patient Self-Determination Act by underscoring some of their most fundamental treatment alternatives. A purely educational situation allows them to explore methods for making healthcare decisions in a climate which is less pressurized than the time of admission to a healthcare facility.

In summary, the Patient Self-Determination Act is designed to make patients better informed about many of their rights regarding treatment decisions. It underscores the role and importance of patient participation in healthcare decisions by clearly identifying the parameters of their decision-making authority. Perhaps its most important feature is the emphasis which it places on the responsibility of patients for the direction which their healthcare takes. In the current climate of healthcare much has been made of the obligations of healthcare professionals and the rights of patients. Little discussion has been centered on the responsibility of patients. The result of the Patient Self-Determination Act can be a focused interest on patient's taking responsibility for the course of their healthcare decisions. The hope is that enlightened and prudent patients, guided by sound assistance in reflecting on their conditions, alternatives, and possibilities will make realistic decisions, within the context of their personal values. These decisions will then take the form of approaches to treatment which will truly benefit them and allow them to achieve their goals.


1. Patient self-determination act of 1990, sections 4206 and 4751 of Omnibus Reconciliation Act of 1990, Pub L No. 101-508 (November 5, 1990).
"[The Patient Self-Determination Act applies] in the case of hospitals, nursing facilities, home health agencies, and hospice programs, . . . and a provider of services or prepaid or eligible organization [to] maintain written policies and procedures with respect to all adult individuals receiving medical care by or through the provider or organization ------
(A) to provide written information to each such individual concerning ------
(i) an individual's rights under State law (whether statutory or as recognized by the courts of the State) to make decisions concerning such medical care, including the right to accept or refuse medical or surgical treatment and the right to formulate advance directives . . . and
(ii) [to provide] the written policies of the provider or organization respecting the implementation of such rights;
(B) to document in the individual's medical record whether or not the individual has executed an advance directive;
(C) not to condition the provision of care or otherwise discriminate against an individual based on whether or not the individual has executed an advance directive (this shall not be construed as requiring the provision of care which conflicts with an advance directive);
(D) to ensure compliance with requirements of State law (whether statutory or as recognized by the courts of the State) respecting advance directives at facilities of the provider or organization (this shall not be construed as prohibiting the application of a State law which allows for an objection on the basis of conscience for any health care provider or an agent of such provider which as a matter of conscience cannot implement an advance directive); and
(E) to provide (individually or with others) for education for staff and the community on issues concerning advance directives. . . .
The written information . . . shall be provided to an adult individual ------
(A) in the case of a hospital, at the time of the individual's admission as an inpatient,
(B) in the case of a skilled nursing facility, at the time of the individual's admission as a resident,
(C) in the case of a home health agency, in advance of the individual coming under the care of the agency,
(D) in the case of a hospice program, at the time of initial receipt of hospice care by the individuals from the program, and
(E) in the case of an eligible organization . . . or an organization provided under [medicare or medicaid] at the time of enrollment of the individual with the organization.
. . . the term 'advance directive' means a written instruction, such as a living will or durable power of attorney for health care, recognized under State law (whether statutory or as recognized by the courts of the State) and relating to the provision of such care when the individual is incapacitated."

2. The right to refuse treatment will be more fully explored in section five of chapter six. Its constitutionality was first established in Quinlan (cf. In re Quinlan. 70 N.J. 10, 355 A.2d 647 (1976)) based on the right to privacy and has been reiterated by many state courts on the same basis. On the federal level the right to refuse treatment was upheld in Cruzan (cf. Cruzan v. Director, Missouri Department of Health. 110 S.Ct. 2841 (1990)) on the basis of the liberty interest of the 14th amendment. Subsequent to the Patient Self-Determination Act, the right to refuse treatment has been emphatically upheld once again in Vacco v. Quill (cf. Vacco v. Quill. 117 S.Ct. 2293 (1997)) on the same basis as it was in Cruzan.

3. Lidz CW et al. Two models of implementing informed consent. Arch Intern Med 1988;148:1385-1389.

4. Berman v. Allen. 80 N.J. 421, 404 A.2d 8 (1979).

5. Canterbury v. Spence. 464 F.2d 772 (D.C.C.A. 1972).

6. Schloendorff v. Society of New York Hospital. 211 N.Y. 125, 105 N.E. 92 (1914). Cf. also Katz J. Informed consent in the therapeutic relationship: legal and ethical aspects. In Reich WT. Encyclopedia of Bioethics. New York: The Free Press, 1978, pages 770-778.

7. Meisel J, Kuczewski M. Legal and ethical myths about informed consent. Arch Intern Med 1996;156:2521-2526.

8. This examination began with Quinlan (Cf. In re Quinlan. 70 N.J. 10, 355 A.2d 647 (1976)) and culminated in Cruzan (Cf. Cruzan v. Director, Missouri Department of Health. 110 SCt. 2841 (1990)).

9. In re Dinnerstein. 6 Mass. App. Ct. 466, 380 N.E.2d 134 (App. Ct. 1978).

10. Cf. In re Quinlan. 70 N.J. 10, 355 A.2d 647 (1976) and Cruzan v. Director, Missouri Department of Health. 110 SCt. 2841 (1990).

11. In re Eichner (In re Storar). N.Y., 420 N.E.2d 64 (1981).