The Patient Self-Determination Act. A matter of life and death

The Patient Self-Determination Act (PSDA) is a federal law, and compliance is mandatory. It is the purpose of this act to ensure that a patient's right to self-determination in health care decisions be communicated and protected. Through advance directives--the living will and the durable power of attorney--the right to accept or reject medical or surgical treatment is available to adults while competent, so that in the event that such adults become incompetent to make decisions, they would more easily continue to control decisions affecting their health care. Without advance directives and the proper adherence to such directives, former President Richard Nixon and former First Lady Jacqueline Kennedy Onassis might still be alive today, in persistent vegetative states. This article examines the history of the act, its importance to each individual, the clinical, ethical and legal issues, and the role of health care professionals in effectively implementing and ensuring compliance of the PSDA.     

Empowerment of the older patient? A randomized, controlled trial to increase discussion and use of advance directives.

OBJECTIVE: To see if an educational intervention directed at older outpatients would lead to increased use or discussion of advance directives and to characterize patients' reasons for not obtaining advance directives. DESIGN: Randomized, controlled trial of an educational intervention versus usual care. SETTING: Outpatient geriatrics clinic of a university hospital. PATIENTS: One hundred and thirty-one non-demented patients over the age of 65 who did not have an advance directive documented in their record at the start of the study. Forty-eight patients were in the trial arm and 83 in the control. MAIN OUTCOME MEASURES: All patients had their charts reexamined 6 months after enrollment to look for the presence of a living will, a durable power of attorney for health care, or a physician's note describing a discussion of advance directives. Trial patients were also re-interviewed to examine their reasons for not executing an advance directive. MAIN RESULTS: Six months after the intervention, only seven of the 48 trial subjects (15%) had an advance directive or note describing discussion of advance directives in their charts compared to eight of the 83 controls (10%) (P greater than 0.05). When asked to give reasons for not obtaining an advance directive, many patients' responses pointed to procrastination as a significant barrier. CONCLUSIONS: Promoting advance directive use is a complicated task. Barriers other than information and access to documents appear to be involved and need to be addressed in future efforts.     

Planning for decisional incapacity. A neglected area in ethics and aging

Practitioners and elderly patients share a common interest in advance planning for future health care decision-making in the event of decisional incapacity. It is argued that advance directives can: assist the elderly person in maximizing self-determination; and help physicians in caring for the elderly and their families by removing conflict potential. Furthermore, the author compares the legal and medical understandings of patient self-determination and the uses of best interest and substituted judgment standards. It is argued that medicine and law differ on the important issues only in degree of emphasis, not in principle. To clarify the issues, a systematic classification of the multiple levels of instruction directives and agent-proxy decision-making models is developed. Finally, it is recommended that health care decision-making for the elderly can be enhanced by encouraging patients to create as much evidence as possible to affirm their preferences and values; and plan the delegation of decisions by appointing a proxy.     

Assessing competency in the elderly

The doctrine of informed consent requires that a patient understand the medical procedure being proposed, that consent be voluntary, and that the patient be competent to give consent. Because of declining cognitive functioning, elderly patients are at significant risk of becoming incompetent and, therefore, unable in the eyes of the law to give informed consent. Advance directives allow competent patients to tell their doctors and the world in general what their health care choices are should they not be able to make their choices clear in the future. The living will and durable power of attorney are two types of advance directives that are legally binding in most states.     

Advance directives as acts of communication: a randomized controlled trial

BACKGROUND: Instructional advance directives are widely advocated as a means of preserving patient self-determination at the end of life based on the assumption that they improve surrogates' understanding of patients' life-sustaining treatment wishes. However, no research has examined whether instructional directives are effective in improving the accuracy of surrogate decisions. PARTICIPANTS AND METHODS: A total of 401 outpatients aged 65 years or older and their self-designated surrogate decision makers (62% spouses, 29% children) were randomized to 1 of 5 experimental conditions. In the control condition, surrogates predicted patients' preferences for 4 life-sustaining medical treatments in 9 illness scenarios without the benefit of a patient-completed advance directive. Accuracy in this condition was compared with that in 4 intervention conditions in which surrogates made predictions after reviewing either a scenario-based or a value-based directive completed by the patient and either discussing or not discussing the contents of the directive with the patient. Perceived benefits of advance directive completion were also measured. RESULTS: None of the interventions produced significant improvements in the accuracy of surrogate substituted judgment in any illness scenario or for any medical treatment. Discussion interventions improved perceived surrogate understanding and comfort for patient-surrogate pairs in which the patient had not completed an advance directive prior to study participation. CONCLUSIONS: Our results challenge current policy and law advocating instructional advance directives as a means of honoring specific patient wishes at the end of life. Future research should explore other methods of improving surrogate decision making and consider the value of other outcomes in evaluating the effectiveness of advance care planning.     

Predictors of advance directive restrictiveness and compliance with institutional policy in a long-term-care facility.

OBJECTIVE: To ascertain factors influencing the level of advance directives selected by nursing home residents or surrogates and the time delay to documentation of these choices in the medical record after implementation of a facility-wide policy. DESIGN: Longitudinal cohort study of nursing home residents followed from date of advance directive policy initiation or time of admission for a maximum of 21 months from study commencement. SETTING: A 315-bed multilevel nursing home. PARTICIPANTS: Four hundred twenty-four nursing home residents (mean age 85, 74.9% female, 96.1% white). OUTCOME MEASURES: Level of advance directive status chosen--full code, do not resuscitate (DNR) or palliative care only--and date documented in the medical record. RESULTS: Factors predictive of restricted advance directives (DNR or palliative care) included age greater than 85 years (P = 0.025), documented use of a surrogate decision maker (P = 0.001), low physical function (P less than 0.001), low cognitive function (P less than 0.001), and having a nursing home-employed physician (P = 0.001). These results were confirmed using logistic regression models. Median time to directive documentation decreased from 54 days for residents admitted in the first quarter to 1 day for residents admitted in the fourth quarter of the year following initiation of an advance directive policy. CONCLUSION: In logistic models, nursing home-employed physicians were more likely to write restricted advance directive orders than community-based physicians even after controlling for resident age, cognitive status, and physical function. In addition, implementation of a formal nursing home advance directive policy can shorten time to physician documentation of resident advance directive status.     

From advance directives to advance care planning: current legal status, ethical rationales and a new research agenda

This paper uses a case example to review the current legal status of advance directives, as well as their ethical rationale. We draw attention to ongoing efforts to institutionalize advance directives, and to some of the tractable and intractable reasons why advance directives are ineffective. We then introduce the concept of advance care planning, and argue that we should not assume that advance care directives have a place in this process. We conclude by offering three reasons why this assumption may operate, and by suggesting that contingency and uncertainty may sometimes overwhelm all rational approaches to medical care.     

Resuscitating advance directives

Advance directives have not fulfilled their promise of facilitating decisions about end-of-life care for incompetent patients. Many legal requirements and restrictions concerning advance directives are counterproductive. Requirements for witnessing or notarizing advance directives make it difficult for patients to complete a written directive during a physician visit. State laws that establish a hierarchy of family surrogates for incompetent patients who have not appointed a proxy are inflexible and may not apply to common clinical situations. Advance directives would be more useful if they emphasized discussing end-of-life care with physicians rather than completing a legal document. State laws should be revised to encourage patients to discuss advance directives with physicians and to complete them during an office visit. Such patient-physician discussions about end-of-life care can lead to more informed patient decisions. Procedures for written advance directives should be simplified. Patients should be able to designate health care proxies through oral statements to physicians. These reforms will encourage discussions between patients and physicians about advance directives and may lead to more informed decisions near the end of life.     

Effects of offering advance directives on medical treatments and costs.

OBJECTIVE: To examine the effects of advance directives on medical treatments and on patient satisfaction and well-being and to determine whether the enhancement of patient autonomy through advance directives provides a more ethically feasible approach to cost control than does the imposition of limits through rationing. DESIGN: Randomized, controlled trial. SETTING: University and Veterans Affairs medical center. PATIENTS: Two hundred and four patients with life-threatening illnesses, 100 of whom died after enrollment in the study. INTERVENTION: Patients randomly assigned to the experimental group were offered the California Durable Power of Attorney (a typical proxy-instruction directive), and patients assigned to the control group were not offered the advance directive. Hospital admissions were monitored to assure that a summary of the document was present in the active medical record at each hospitalization. MEASUREMENTS: Cognitive function, patient satisfaction, psychological well-being, health locus of control, sense of coherence, health-related quality of life, receipt of medical treatments, and medical treatment charges. RESULTS: No significant differences were found between advance-directive and control groups regarding psychosocial variables, health outcome variables, and medical treatments or charges. Patients offered an advance directive had an average hospital stay of 40.8 days (95% CI, 32.2 to 49.4 days), compared with an average of 33.1 days (95% CI, 26.0 to 40.2 days) for controls. Patients offered an advance directive were charged an average of $19,502 (95% CI, $13,030 to $25,974) for medical treatments in the last month of life compared with $19,700 (95% CI, $13,704 to $25,696) for controls. CONCLUSIONS: Despite claims that public demand for longer life accounts for rising medical costs, most surveys suggest that patients are calling for less, not more, of the expensive, high-technology treatment often used in terminal phases of illness. Executing the California Durable Power of Attorney for Health Care and having a summary copy placed in the patient's medical record had no significant positive or negative effect on a patient's well-being, health status, medical treatments, or medical treatment charges.     

The effect of advance care planning on completion of advance directives and patient satisfaction in people with HIV/AIDS

The effects of advance care planning are poorly understood. The purpose of this study was to evaluate the effect of an advance care planning intervention on the completion of advance directives (ADs) and patient satisfaction. A volunteer sample of persons with HIV/AIDS received advance directive documents, watched an educational video and received individual counselling on completing an advance directive during three face-to-face interviews over approximately six months. The advance care planning intervention was associated with an increase in advance directive completion rates from 16.4% to 40.7% (p = 0.001), but 23.1% of advance directives reported as completed were legally invalid. There was a trend towards decreased overall patient satisfaction with health care (p = 0.07). Advance are planning increases the rate of AD completion but many 'completed' advance directives are legally invalid. Advance care planning did not improve patient satisfaction with health care.     

The Australian experience of advance directives and possible future directions

This paper analyses the role that advance directives can play in the formation of advanced care planning. Following on from a review of the legal history of advance directives in Australia, including the common law and statutory regimes, it is argued that schemes for advance directives have not yet proven to be successful. It is proposed that what is needed is a more integrated approach, whereby advance directives are but one mechanism used in a wider concept of advanced care planning. This integrated approach should employ a variety of mechanisms including proxy decision‐making, structured concepts of best interests and clearly defined dispute resolution processes.     

Advance care planning in residential care

Abstract Background : To provide optimal care for our ageing population, some form of advance care planning (ACP) is essential. Overseas data suggest that the process of ACP and the use of advance care directives (ACD) is suboptimal in residential care institutions. By comparison there are few Australian data.
Aim : To study the process of ACP and the prevalence of ACD in residential care.
Methods : Cross-sectional study using a questionnaire in the Hunter area, NSW, Australia.
Results : Very low levels of formal advance directives were found (available for only 0.2%). Only 1.1% of residents had no-CPR' orders documented in the medical record, while 5.6% had a formal guardian and 2.8% had an enduring guardian.
Informal processes of advance planning were much more prevalent. Sixty-five per cent had a `person responsible' recorded to make decisions for them while in 13% of cases, there was `staff consensus' as to the optimal care for the patient. However, in 10.6% there was no clear process for medical decision making identified.
Conclusions : Advanced directives are infrequently used in residential care. Further qualitative and quantitative studies are warranted to explore current processes of decision making.     

Advance Directives: theoretical concept and practical significance in the USA

The article examines on the basic of empirical data the discrepancy between the theoretical demand and the practical role of advance directives. Often advance directives have no influence on medical decision-making in clinical care of critically ill patients. The vague language of the widely used standard living wills and the lack of physician-patient communication in the process of delivering an advance directives are contributing factors. However, many physicians even disregard patients' preferences in concrete and meaningful living wills at the end of life. Besides the lack of information many even seriously ill patients do not deliver an advance because they misjudge their medical prognosis and life expectancy. Often the communication between patients and doctors are blocked because they expect from the each other the first step to talk about end of life decisions and advance directives. In this context physicians claim lack of time, training in communication skills and their discomfort in talking about death and dying with their patients.     

When, how, and why of advance directives: tools for the cardiovascular nurse.

In the U.S., cardiovascular disease is the number one cause of death. The chronicity and unpredictable nature of cardiovascular disease will affect thousands of patients and families who are often called upon to make difficult end of life choices. The federal legislation of the Patient Self Determination Act (PSDA) was passed in 1990 and went into affect in December of 1991. The essence of this legislation was to empower the public with the right to make end of life decisions. However, after almost 10 years of implementation there is little evidence of national acceptance by the health care industry as evident in the literature. Likewise, the public demonstrates limited knowledge regarding advance directives. The law applies to all health care facilities that receive any federal reimbursement for services and includes hospitals, nursing homes, home health agencies, and clinics. The PSDA requires health care institutions to establish mechanisms for disseminating information about advance directive, to patients and to designate personnel responsible for discussing advance directives with patients. In this paper, practical and clinical application to the special considerations of the patient and end of life choices will be discussed. A focus on facts, resources, and other information will be presented for the cardiovascular nurse in a variety of health care settings.     

Factors influencing attitudes toward advance directives in Korean older adults

AimWe aimed to determine the factors influencing attitudes toward advance directives in Korean older adults with consideration of an Asian cultural background.MethodsWe recruited community-dwelling older adults aged 60 years or older at a regional senior welfare center in Korea. Demographic factors and mental and physical health status were examined using questionnaires and a physical examination. The questionnaire also assessed perceived necessity of advance directives and related experiences.ResultsMost participants (79.32%) agreed that advance directives were necessary. Older adults with high education levels (odds ratio [OR] 2.31, 95% confidence interval [CI] 0.84–6.34), low economic status (OR 2.09, 95% C.I. 0.60–7.27), and poor cognitive function (adjusted odds ratio [aOR] 2.10, 95% CI 0.89–4.97) had a greater odds of agreeing that advance directives are necessary. All participants with self-care problems (9/9) and most participants with at risk status of physical functioning (13/14) reported agreement. Death-related experiences were also associated. Notably, individuals who had discussions on end-of-life care with family members showed a greater odds of agreeing that advance directives are necessary (aOR 2.12, 95% CI 0.88–5.11).ConclusionsThe factors associated with increased agreement that advance directives are necessary were high education level, low economic status, poor cognitive function, problems in self-care, poor physical functioning, death-related experiences. Especially, discussions of end-of-life care with family members increased the agreement. Thus, discussion on end-of-life care should be encouraged and the factors influencing older adults’ attitudes toward advance directives should be considered in developing policies for such discussion.     

Practical methods to increase use of advance medical directives

OBJECTIVE: To compare the effectiveness of two means for increasing the use of advance medical directives: written materials only versus written materials and an educational videotape. DESIGN: Population-based, randomized controlled trial with 3-month follow up. SETTING: Kaiser Permanente Colorado Region, a not-for-profit group-model health maintenance organization. PARTICIPANTS: A population-based sample of all 1,302 members aged 75 years and older who used the Franklin Medical Office, excluding 55 persons who died or disenrolled during the study period or were identified by their physicians as blind or cognitively impaired. INTERVENTIONS: All subjects were mailed a 10-page cartoon-illustrated educational pamphlet on patient choices, a selection of Colorado advance medical directive forms, and a guide to their completion; 619 subjects also were mailed a 20-minute videotape on advance directives. Both groups had access to a study nurse for assistance in completing and placing advance medical directives. MEASUREMENTS AND MAIN RESULTS: The main outcome measure is the proportion of subjects who placed a directive in their medical record for the first time. Placement rates increased almost identically, from 21.2% to 35.0% in the written materials-only group and from 18.9% to 32.6% in the group receiving the videotape (95% confidence interval for difference −0.04, 0.04, p=.952). CONCLUSIONS: In an elderly population with a substantial baseline placement rate, mailing of written materials substantially increased placement of an advance directive in the medical record, but the addition of a videotape did not. Mailing the video did increase the use of treatment trials and made patients more aware of reasons not to use advance directives. Presented at the Association for Health Services Research, Atlanta, Ga., 1996, and the American Public Health Association, New York, N.Y., 1996. This study was supported by a grant from Kaiser Permanente’s Sidney Garfield Memorial Fund.     

Promoting signing of advance directives in faith communities

OBJECTIVE: To develop a participatory educational program implemented in faith communities that would increase discussion and signing of two types of advance directives-living will and durable power of attorney for health care decisions. DESIGN: Longitudinal study with four annual cycles of program implementation, evaluation, and revision incorporating a program that fostered the discussion, signing, and/or revision of advance directives. The program involved an educational workbook and ongoing support by parish nurses. SETTING: Seventeen faith communities in Wichita, Kansas. Faith communities included several predominantly white congregations, as well as several primarily African-American and Hispanic congregations. PARTICIPANTS: Seventeen faith communities, their pastors, and 25 parish nurses worked with 361 self-selected residents, living in community settings, to participate in the program as members of their faith communities. Congregations were recruited by the executive director of a local interfaith ministries organization and parish nurses. MAIN RESULTS: Two hundred forty-eight (69%) of the congregants who started the program completed it. Of the program completers, 83 (33%) had a directive prior to the program and 140 (56%) had a directive after completion. One hundred eighty-six of the completers discussed directives with family members. Overall, 89 (36%) of the 248 program completers revised an existing directive or signed one for the first time. Age was positively related to having signed/revised a directive prior to the program. Fear that advance directives would be used to deny medical care was negatively related to signing both prior to the program and after program completion, and contributed to participants' reluctance to sign directives. CONCLUSIONS: Educational programs implemented by parish nurses in faith communities can be effective in increasing rates of discussion, revision, and/or signing of advance directives.     

Using the family covenant in planning end-of-life care: obligations and promises of patients,families, and physicians

Physicians and families need to interact more meaningfully to clarify the values and preferences at stake in advance care planning. The current use of advance directives fails to respect patient autonomy. This paper proposes using the family covenant as a preventive ethics process designed to improve end-of-life planning by incorporating other family members--as agreed to by the patient and those family members--into the medical care dialogue. The family covenant formulates advance directives in conversation with family members and with the assistance of a physician, thereby making advance directives more acceptable to the family, and more intelligible to other physicians. It adds the moral force of a promise to the obligation of respecting a patient's preferences about end-of-life care. These negotiations between patient, family, and physician, from early planning phases through implementation, should greatly reduce the incidence of family disagreements on what the patient would have wanted. The family covenant ensures advance directive discussions within the family, promotes and respects the autonomy of other family members, and might even spur others in the family to complete advance directives through additional covenants. The family covenant holds the potential to transform moral quagmires into meaningful moral conversation.     

The need for safeguards in advance care planning

The recent uproar about Medicare “death panels” draws attention to public and professional concerns that advance care planning might restrict access to desired life-sustaining care. The primary goal of advance care planning is to promote the autonomy of a decisionally incapacitated patient when choices about life-sustaining treatments are encountered, but the safety of this procedure has not received deserved scrutiny. Patients often do not understand their decisions or they may change their mind without changing their advance care directives. Likewise, concordance between patients’ wishes and the understanding of the physicians and surrogate decision makers who need to represent these wishes is disappointingly poor. A few recent reports show encouraging outcomes from advance care planning, but most studies indicate that the procedure is ineffective in protecting patients from unwanted treatments and may even undermine autonomy by leading to choices that do not reflect patient values, goals, and preferences. Safeguards for advance care planning should be put in place, such as encouraging physicians to err on the side of preserving life when advance care directives are unclear, requiring a trained advisor to review non-emergent patient choices to limit life-sustaining treatment, training of clinicians in conducting such conversations, and structured discussion formats that first address values and goals rather than particular life-sustaining procedures. Key targets for research include: how to improve completion rates for person wanting advance care directives, especially among minorities; more effective and standardized approaches to advance care planning discussions, including how best to present prognostic information to patients; methods for training clinicians and others to assist patients in this process; and systems for assuring that directives are available and up-to-date.