As Part of the Omnibus Budget Reconciliation Act of 1990, the Patient Self Determination Act legislates new responsibilites for healthcare facilities. The authors served as members of the California Consortium on Patient Self-Determination, and the materials produced by this group offer healthcare facilities a valuable guide for implementing the PSDA. The ACt follows a historical trend led by doctrines of informed consent and increasing patient autonomy regarding rights to accept or refuse medical treatment (...) and to execute advance directives. The requirements of the Act will influence healthcare facilities and how they communicate with patients about advance directives. Although the Act seeks to increase awareness of advance directices among all participants in healthcare interactions, it could pose major stumbling blocks to providing sensitive and humane care if certain concerns are nor addressed adequatley. The benefits of the Act could be far reaching and substantial for patients and healthcare facilities alike. (shrink)

The Patient Self-Determination Act is a fact. Finally, respect for patient autonomy has been guaranteed. At first sight, there seems little reason to object to any measure that intends to increase the autonomy of the patient. Too long, one may argue, physicians have behaved paternalistically; too often, they have been advised to change this habit. If the profession of medicine is unwilling or simply unable to grant the patient the decision-making power that is her (...) due, the law has to step in. One may add, this law in no way hinders professional autonomy; by requiring a hospital official to provide the patient with information about advance directive, the law actually reduces the work load of the physician, who is already overburdened. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:The Patient Self-Determination ActElizabeth Leibold McCloskey (bio)What are the ethics of extending the length of life? We know that we cannot artificially end life (Thou Shalt not Kill), but how about artificially extending life? Is that always good, sometimes good?... In ethics, is keeping people alive the highest good? Should our priority be to keep people breathing?... What does basic religious ethics say about this?(John C. (...) Danforth, letter to the author, 19 August 1989)The Patient Self-Determination Act, signed into law as part of the Omnibus Budget Reconciliation Act of 1990 (OBRA '90) last November, marks the first time that Congress has passed legislation concerning the ethics of life-sustaining medical treatment. The bill was spearheaded by Senator John C. Danforth (RMO), who has a special interest in this area. An Episcopal priest, Danforth was formerly an assistant chaplain at New York's Memorial Sloan-Kettering Cancer Center and now sits as a senior member of the Senate Finance Committee, which oversees Medicare and Medicaid. Although Senator Danforth's legislative initiative was not a result of the Cruzan case, it was in his state of Missouri that the U.S. Supreme Court case involving removal of Nancy Cruzan's feeding tube arose (Cruzan v. Director of Missouri Department of Health, U.S. Supreme Court, 58 LW 4916, 26 June 1990). From his unique vantage point, he felt it was time to craft a legislative response to some of the difficult issues surrounding prolongation of life.The short answer to Senator Danforth's questions about when to artificially extend life is simple enough: people must be free to determine that for themselves. Common law and common sense dictate such a conclusion; living will and health care proxy statutes, enacted in almost every state, codify that right. The Catholic moral tradition teaches that one is not morally obligated to use extraordinary means to prolong life, a tradition shared both by the mainline Protestant and the reform and conservative Jewish community. Yet most people are unaware of their fundamental legal right to make such decisions, and as court cases from Quinlan (In re Quinlin, 137 N.J. Super. 227, 1975) to Cruzan demonstrate, few know [End Page 163] how to make arrangements for this right to be exercised if they become incapacitated.Meanwhile, health care practices are often driven by a denial of death. When Senator Danforth and Senator Daniel Patrick Moynihan (D-NY) introduced the bill on October 17, 1989, Senator Danforth said:More and more it is arguable that we play God by subjecting people to unwanted and sometimes unnecessary treatment, treatment that unnaturally prolongs the dying process. Our health care system has become obsessed with extending life, at times neglecting the caring component of medicine and trampling on the rights of patients.(Congressional Record 1989, 135:5.13566)The American Hospital Association estimates that 70 percent of deaths now occur after a determination to withhold or withdraw medical treatment. Many of those decisions are made without the benefit of an incapacitated patient's views, yet a Harvard study revealed that 95 percent of the population would like to prepare in advance for such decisions. Only 4 percent of hospitals have a systematic method of asking patients if they have an advance directive. Family members confront painful choices in the face of uncertainty about their loved one's wishes and it can be even more painful when a family knows the patient's desires but providers and the courts act otherwise because clear evidence is lacking.The Patient Self-Determination Act is rooted in the belief that people should be given information that enables them to specify the extent of medical treatment they wish to receive should they become incapacitated. The public should be educated about applicable state laws that protect the individual's right to make such choices through the use of an advance directive.The Act moves toward that goal by promoting knowledge of state laws. It requires every hospital, nursing home, home health agency, hospice, and health maintenance organization that participates in Medicaid or Medicare to routinely give all adult patients information about advance directives. Patients will also be given information on the... (shrink)

In 1990, I voiced strong doubts about a bill entitled the Patient Self-Determination Act, which had been introduced in the U.S. Senate by John Danforth and Daniel Patrick Moynihan. I hoped to see it defeated. In 1991, after the bill had become a small part of a massive status adopted in the waning hours of the 101st Congress, I devoted countless hours to its implementation. I wanted to see it succeed. Why the change?

This is an extremely readable and interesting contribution. The author takes the reader through the Patient Self-Determination Act in some depth, but doesn't make any attempt to look at its provisions in real detail. This cannot be taken as an omission, as the purpose of the book is to explore the principles underpinning the legislation and to explore its ethical content. In that respect, this is a very interesting exercise. On one ….

This issue’s “Legal Briefing” column covers recent legal developments involving the Patient Self-Determination Act . Enacted in the wake of the U.S. Supreme Court’s Cruzan decision in 1990, the PSDA remains a seminal event in the development of U.S. bioethics public policy, but the PSDA has long been criticized as inadequate and ineffective. Finally, recent legislative and regulatory changes promise to revitalize and rejuvenate it. The PSDA has been the subject of recent articles in The Journal of (...) Clinical Ethics.I categorize new legal developments concerning the PSDA into the following eight sections:1. Background and History2. Rules and Requirements3. Criticism and Challenges4. Failed Efforts to Amend the PSDA5. Personalize Your Care Act of 20136. New Regulations7. New Regulatory Guidance8. Expanded Enforcement. (shrink)

This study describes the results of a retrospective review of patients' charts who had an advanced directive (AD) and who were hospitalized in a tertiary, acute care teaching hospital. The purpose of the review was to understand from clinical, sociological, ethical and legal perspectives the nature and utility of ADs. Findings and implications of the review are discussed in terms of: patient demographics; diagnoses; quality of ADs; influence of ADs on clinical decisions; and legal aspects of ADs.

The Patient Self-Determination Act imposes new requirements on health care providers for informing patients of their rights to make decisions concerning their medical care. The Act is intended to, and is likely to, encourage patients and residents of certain healhtcare facilities to consider their treatment preferences in advance of incapacity and, in particular, to determine the circumstances in which life-sustaining treatment will be provided to them. However, many questions concerning how healthcare providers will implement the Act remain (...) unanswered. (shrink)

As of December 1991, the Patient Self-Determination Act mandated that health care institutions which receive funding from Medicare or Medicaid provide written information about persons rights to participate in medical decision-making and formulate advance directives. The PSDA required each state…acting through a State agency, association, or other private nonprofit entity develop a written description of the law of the State concerning advance directives that would be distributed by providers or organizations under the requirements of [the Act].

As of December 1991, the Patient Self-Determination Act mandated that health care institutions which receive funding from Medicare or Medicaid provide written information about persons rights to participate in medical decision-making and formulate advance directives. The PSDA required each state…acting through a State agency, association, or other private nonprofit entity develop a written description of the law of the State concerning advance directives that would be distributed by providers or organizations under the requirements of [the Act].

This is an extremely readable and interesting contribution. The author takes the reader through the Patient Self-Determination Act in some depth, but doesn't make any attempt to look at its provisions in real detail. This cannot be taken as an omission, as the purpose of the book is to explore the principles underpinning the legislation and to explore its ethical content. In that respect, this is a very interesting exercise. On one ….

The Patient Self-Determination Act (PSDA) requires hospitals to ask patients upon admission whether they have an advance directive. Although the PSDA has received extensive criticism, little attention has been paid to the cost of the law, either during its legislative course or following its implementation. Nonetheless, several tangible and intangible costs are associated with the PSDA. Such costs may be incurred by different parties. This paper examines the costs and benefits of the PSDA and illustrates the extent (...) of some of its tangible costs. The incremental start-up cost for one institution's response to the PSDA is estimated to be $49,304 ($1.31 per admission) and the total implementation cost of the program to be $114,528. In addition, the national incremental start-up cost for hospitals to implement the PSDA is estimated to be between $43,625,114 and $101,569,922. Finally, the potential implications of the PSDA for future governmental health care ethics regulation are discussed. (shrink)

Background: Since the passage of the Patient Self-Determination Act, numerous policy mandates and institutional measures have been implemented. It is unknown to what extent those measures have affected end-of-life care, particularly with regard to the do-not-resuscitate order.Methods: Retrospective cohort study to assess associations of the frequency and timing of DNR orders with advance directive status, patient demographics, physician’s specialty and extent of documentation of discussion on end-of-life care.Results: DNR orders were more frequent for patients on a (...) medical service than on a surgical service and were made earlier in the hospital stay for medicine than for surgical patients . 22.18% of all patients had some form of an advance directive in their chart, yet this variable had no impact on the frequency or timing of DNR ordering. Documentation of DNR discussion was significantly associated with the frequency of DNR orders and the time from DNR to death .Conclusions: The physician’s specialty continues to have a significant impact on the frequency and timing of DNR orders, while advance directive status still has no measurable impact. Additionally, documentation of end-of-life discussions is significantly associated with varying DNR ordering rates and timing. (shrink)

This paper reports on a mail survey of Jewish nursing homes nationally regarding their compliance with the federal Patient Self-Determination Act that became effective in December, 1991. Data is presented about the extent to which institutions' religious affiliation has influenced their advance directive policies and the procedures they have adopted to implement those policies. A content analysis of written advance directive policies used in Jewish nursing homes is presented also.

Abstract‘Assisted dying’ (an umbrella term for euthanasia and/or assisted suicide) is frequently defended as an act of autonomous self-determination in death but, given a choice, between 93.3% and 100% of patients are reluctant to self-administer (median 99.5%). If required to self-administer, fewer patients request assisted death and, of these, a sizable proportion do not self-administer but die of natural causes. This manifest avoidance runs counter to the concept of autonomous self-determination, even on the (...) supposition that suicide could truly be autonomous. The avoidance of self-administration does not show that self-administration, when it occurs, is necessarily autonomous. It suggests, rather, that there are other frames by which assisted dying is being understood. One such is desire for medical control, a desire shared by patients and doctors. Such a frame is not directed towards an exacting autonomy (self-directed action by the patient) but towards a comforting heteronomy (letting the doctor take control). (shrink)

The Patient Self Determination Act of 1991 brought much needed attention to the importance of advance care planning and surrogate decision-making. The purpose of this law is to ensure that a patient’s preferences for medical care are recognized and promoted, even if the patient loses decision-making capacity. In general, patients are presumed to have DMC. A patient’s DMC may come under question when distortions in thinking and understanding due to illness, delirium, depression or other (...) psychiatric symptoms are identified or suspected. Physicians and other healthcare professionals working in hospital settings where medical illness is frequently comorbid with depression, adjustment disorders, demoralization and suicidal ideation, can expect to encounter ethical tension when medically sick patients who are also depressed or suicidal request do not resuscitate orders. (shrink)

The fiduciary nature of the patient-physician relationship requires clinicians to act in the best interest of their patients. Patients are vulnerable due to their health status and lack of medical knowledge, which makes them dependent on the clinicians’ expertise. Competent patients, however, may reject the recommendations of their physician, either refusing beneficial medical interventions or procedures based on their personal views that do not match the perceived medical indication. In some instances, the patients’ refusal may jeopardize their health or (...) life but also compromise the clinician’s moral responsibility to promote the patient’s best interests. In other words, health professionals have to deal with patients whose behavior and healthcare decisions seem counterproductive for their health, or even deteriorate it, because of lack of knowledge, bad habits or bias without being the patients’ free voluntary choice. The moral dilemma centers on issues surrounding the limits of the patient’s autonomy (rights) and the clinician’s role to promote the well-being of the patient (duties). In this paper we argue that (1) the use of manipulative strategies, albeit considered beneficent, defeats the purpose of patient education and therefore should be rejected; and (2) the appropriate strategy is to empower patients through patient education which enhances their autonomy and encourages them to become full healthcare partners as opposed to objects of clinical intervention or entities whose values or attitudes need to be shaped and changed through education. First, we provide a working definition of the concept of patient education and a brief historical overview of its origin. Second, we examine the nature of the patient-physician relationship in order to delineate its boundaries, essential for understanding the role of education in the clinical context. Third, we argue that patient education should promote self-rebiasing, enhance autonomy, and empower patients to determine their therapeutic goals. Finally, we develop a moral framework for patient education. (shrink)

Since 1991, the Patient Self-Determination Act (PSDA) has required all health care institutions that receive Federal funds to inform patients upon admission of their rights to make decisions about medical care and to execute advance directives. Implementation of the PSDA presents a special challenge for state mental hospitals. The relevance and possible negative therapeutic impact of discussing end of life decisions at the time of an acute psychiatric admission has recently been raised in the literature. Other ethical (...) dilemmas arising from the interplay between mental illness and informed consent for medical treatment, particularly for older patients committed to state mental hospitals, have been highlighted by the PSDA. In this article we discuss some of the issues raised by implementation of the PSDA in this setting. (shrink)

Recent media reports have drawn widespread attention to the experiences of patients who are denied reproductive services at Catholic hospitals. For some patients, such as those experiencing miscarriage, denial of appropriate treatment can lead to serious health consequences. However, many patients are unaware of the limitations on services available at religiously affiliated health care institutions. As a result, patients’ ability to make informed and autonomous decisions about where to seek treatment is hindered. There are currently no federal or state laws (...) requiring health care institutions to inform patients directly of the full scope of medical services they are unable to provide on the basis of religion or conscience. Given religious hospitals’ significant role in the provision of health care in the United States, it is essential that patients be clearly informed about institutional limitations on care. This goal would be best served by adopting a federal disclosure law similar to the Patient Self-Determination Act. (shrink)

Objectives: To investigate the current situation of completing the informed consent for do-not-resuscitate (DNR) orders among the competent patients with terminal illness and the ethical dilemmas related to it. Participants: This study enrolled 152 competent patients with terminal cancer, who were involved in the initial consultations for hospice care. Analysis: Comparisons of means, analyses of variance, Student’s t test, χ2 test and multiple logistic regression models. Results: After the consultations, 117 (77.0%) of the 152 patients provided informed consent for hospice (...) care and DNR orders. These included 21 patients (17.9%) who signed the consent by themselves, and 96 (82.1%) whose consent sheet was signed only by family members. The reasons why patients were not involved in the discussions toward the consent (n = 82) included poor physical or psychological condition (44.9%), concerns of the consultant hospice team (37.2%), and the family’s refusal (28.2%). On a multivariate analysis, patients’ awareness of their poor prognosis (odds ratio = 4.07, 95% confidence interval = 2.05 to 8.07) and their understanding of hospice care (2.27, 1.33 to 3.89) were two independent factors (p<0.01) that influenced their participation in the discussions or their personal signature in the informed consent. Conclusion: The family-oriented culture in Asian countries may violate the principles of the Patient Self-Determination Act and the requirements of the Hospice Care Law in Taiwan, which inevitably poses an ethical dilemma. Earlier truth-telling and continuing education of the public by hospice care workers will be helpful in solving such ethical dilemmas. (shrink)

Recent legislation, such as the Patient Self-Determination Act, establishes advance directives as an acceptable procedural means of incorporating patients’ preferences for life-sustaining treatments into their medical care. Advance directives can enhance medical decision making since they provide patients with an opportunity to communicate their preferences before suffering from an acute illness that may preclude their ability to do so.Although patients expect discussions about life-sustaining therapies to be initiated by their physicians, very little is known about what prompts (...) physicians to discuss advance directives with their patients. As in other areas of clinical decision making, there is evidence that patients’ sociodemographic factors influence whether discussions about advance directives occur between patients and their physicians. In one study of persons with the acquired immunodeficiency syndrome, those who had not had discussions about advance directives with their physicians tended to be non-white, have no prior hospitalization, and were more likely to have been cared for in a health maintenance organization than in a teaching hospital. (shrink)

Recent legislation, such as the Patient Self-Determination Act, establishes advance directives as an acceptable procedural means of incorporating patients’ preferences for life-sustaining treatments into their medical care. Advance directives can enhance medical decision making since they provide patients with an opportunity to communicate their preferences before suffering from an acute illness that may preclude their ability to do so.Although patients expect discussions about life-sustaining therapies to be initiated by their physicians, very little is known about what prompts (...) physicians to discuss advance directives with their patients. As in other areas of clinical decision making, there is evidence that patients’ sociodemographic factors influence whether discussions about advance directives occur between patients and their physicians. In one study of persons with the acquired immunodeficiency syndrome, those who had not had discussions about advance directives with their physicians tended to be non-white, have no prior hospitalization, and were more likely to have been cared for in a health maintenance organization than in a teaching hospital. (shrink)

Background Following passage of the Patient Self Determination Act in 1990, health care institutions that receive Medicare and Medicaid funding are required to inform patients of their right to make their health care preferences known through execution of a living will and/or to appoint a surrogate-decision maker. We evaluated the impact of external factors and perceived patient preferences on physicians’ decisions to honor or forgo previously established advance directives (ADs). In addition, physician views regarding legal risk, (...) patients’ ability to comprehend complexities involved with their care, and impact of medical costs related to end-of-life care decisions were explored. Methods Attendees of two Mayo Clinic continuing medical education courses were surveyed. Three scenarios based in part on previously court-litigated matters assessed impact of external factors and perceived patient preferences on physician compliance with patient-articulated wishes regarding resuscitation. General questions measured respondents’ perception of legal risk, concerns over patient knowledge of idiosyncrasies involved with their care, and impact medical costs may have on compliance with patient preferences. Responses indicating strength of agreement or disagreement with statements were treated as ordinal data and analyzed using the Cochran Armitage trend test. Results Three hundred eighty-eight of 951 surveys were completed (41% response rate). Eighty percent reported they were likely to honor a patient’s AD despite its 5 year age. Fewer than half (41%) would honor the AD of a patient in ventricular fibrillation who had expressed a desire to “pass away in peace.” Few (17%) would forgo an AD following a family’s request for continued resuscitative treatment. A majority (52%) considered risk of liability to be lower when maintaining someone alive against their wishes than mistakenly failing to provide resuscitative efforts. A large percentage (74%) disagreed that patients could not appreciate complexities surrounding their care while 69% agreed that costs should never impact a physician’s decision as to whether to comply with a patient’s AD. Conclusions Our findings highlight the impact, albeit small, external factors have on physician AD compliance. Most respondents based their decision on the clinical situation at hand and interpretation of the patient’s initial wishes and preferences expressed by the AD. (shrink)

ZusammenfassungDie jüngste höchstrichterliche Rechtsprechung zur Selbstbestimmung der Patienten und zur Normierung medizinischer Handlungen am Lebensende hat eine intensive Debatte ausgelöst. Das Urteil und die akademisch vorgetragene Kritik werden einer grundlegenden medizinethischen Analyse unterworfen. Sie betrifft die objektive Eingrenzung der Zulässigkeit einer Behandlungsbegrenzung und die Subsumtion des Wachkomas als irreversibel tödliches Grundleiden, das ärztliche Ermessen bei der Indikationsstellung, die normative Einordnung einer Ernährungstherapie am Lebensende und die Verbindlichkeit von Patientenverfügungen. Die medizinethische Kritik offenbart eine unzureichende Wahrnehmung medizinischer und medizinethischer professioneller Dokumente (...) und den Rückgriff auf medizinethisch veraltete Konzeptionen der Sterbehilfe durch das Gericht. Die Folge ist eine fehlerhafte Subsumtion der Wachkomapatienten in die Kategorie irreversibel tödlicher Erkrankungen und eine inhaltliche Schwächung der Verbindlichkeit von Patientenverfügungen. Beides bedarf dringend der Korrektur. (shrink)

Advance health care directives and informed consent remain the cornerstones of patients' right to self-determination regarding medical care and preferences at the end-of-life. However, the effectiveness and clinical applicability of advance health care directives to decision-making on the use of life support systems at the end-of-life is questionable. The Uniform Anatomical Gift Act (UAGA) has been revised in 2006 to permit the use of life support systems at or near death for the purpose of maximizing procurement opportunities of (...) organs medically suitable for transplantation. Some states have enacted the Revised UAGA (2006) and a few of those have included amendments while attempting to preserve the uniformity of the revised Act. Other states have introduced the Revised UAGA (2006) for legislation and remaining states are likely to follow soon. (shrink)

ZusammenfassungDie jüngste höchstrichterliche Rechtsprechung zur Selbstbestimmung der Patienten und zur Normierung medizinischer Handlungen am Lebensende hat eine intensive Debatte ausgelöst. Das Urteil und die akademisch vorgetragene Kritik werden einer grundlegenden medizinethischen Analyse unterworfen. Sie betrifft die objektive Eingrenzung der Zulässigkeit einer Behandlungsbegrenzung und die Subsumtion des Wachkomas als irreversibel tödliches Grundleiden, das ärztliche Ermessen bei der Indikationsstellung, die normative Einordnung einer Ernährungstherapie am Lebensende und die Verbindlichkeit von Patientenverfügungen. Die medizinethische Kritik offenbart eine unzureichende Wahrnehmung medizinischer und medizinethischer professioneller Dokumente (...) und den Rückgriff auf medizinethisch veraltete Konzeptionen der Sterbehilfe durch das Gericht. Die Folge ist eine fehlerhafte Subsumtion der Wachkomapatienten in die Kategorie irreversibel tödlicher Erkrankungen und eine inhaltliche Schwächung der Verbindlichkeit von Patientenverfügungen. Beides bedarf dringend der Korrektur. (shrink)