Special Article
A Prospective Study of Advance Directives for Life-Sustaining Care
N Engl J Med 1991; 324:882-888March 28, 1991
- Abstract
- Abstract
Background
The use of advance directives is recommended so that people can determine the medical care they will receive when they are no longer competent, but the effectiveness of such directives is not clear.
Methods.
In a prospective study conducted over a two-year period, 126 competent residents of a nursing home and 49 family members of incompetent patients were interviewed to determine their preferences with respect to hospitalization, intensive care, cardiopulmonary resuscitation, artificial ventilation, surgery, and tube feeding in the event of critical illness, terminal illness, or permanent unconsciousness. Advance directives, consisting of signed statements of treatment preferences, were placed in the medical record to assist in care in the nursing home and to be forwarded to the hospital if necessary.
Results.
In an analysis of 96 outcome events (hospitalization or death in the nursing home), care was con
Media in This Article
Table 1
Characteristics of the Patients.Table 2
Preferences of 126 Nursing Home Residents Regarding Life-Sustaining Treatment.Article Activity
- Article
The practice of medicine in the United States is imbued with the principle that patients have the right of self-determination.1 , 2 The most supreme exercise of this right occurs when patients consent to life-sustaining treatments or refuse them.3 Unfortunately, patients are often incapable of participating in the decision to use life-sustaining treatments when the need arises. To preserve their autonomy in such situations, advance directives such as the living will have been created.4 , 5 Advance directives allow competent persons to extend their right of self-determination into the future, by recording choices that are intended to influence their future care should they become unable to make choices.6 Despite wide advocacy of advance directives5 6 7 8and their legalization in 40 states, there is no information on how well they accomplish their purpose. Only anecdotal reports9 and surveys of the attitudes of patients and physicians are available.10 We therefore conducted a prospective study to examine the effectiveness of these directives.
Methods
Study Subjects
All patients residing in a 120-bed skilled-care and intermediatecare nursing home in central North Carolina for at least one week between April 1, 1986, and July 31, 1987, were eligible to partici-
sistent with previously expressed wishes 75 percent of the time; however, the presence of the written advance directive in the medical record did not facilitate consistency. Among the 24 events in which inconsistencies occurred, care was provided more aggressively than had been requested in 6 cases, largely because of unanticipated surgery or artificial ventilation, and less aggressively than requested in 18, largely because hospitalization or cardiopulmonary resuscitation was withheld. Inconsistencies were more likely in the nursing home than in the hospital.
Conclusions. The effectiveness of written advance directives is limited by inattention to them and by decisions to place priority on considerations other than the patient's autonomy. Since our study was performed in only one nursing home and one hospital, other studies are necessary to determine the generalizability of our findings. (N Engl J Med 1991; 324:882–8.)
pate. The nursing home is licensed in North Carolina and certified for participation in the Medicaid and Medicare programs.
Patients were included in the study if they gave consent, and those incompetent to do so were included if their family members consented to the patient's participation. A patient was considered competent to give informed consent if, after being read the introductory explanation of the project, the patient (1) stated, on being asked, that he or she understood the project, (2) could paraphrase the introductory explanation, and (3) could sign or mark the consent form. These same criteria were used to judge the patient's competence to create an advance directive.
For each patient in the study, a family member or another surrogate also participated whenever possible. If the patient was competent to be interviewed, he or she designated the surrogate decision maker. If the patient was not competent to be interviewed, the selected surrogate was the person identified in the nursing home record as being financially responsible for the patient.
Questionnaires
The survey instrument included demographic questions about the patient's age, race, sex, education, and marital status. To ascertain their general preferences regarding life-sustaining treatment, the patients were asked which of the following statements they agreed with: "I want my doctor to keep me alive no matter how sick I am" or "There will be a time when I want my doctor to stop keeping me alive."
The patients were then asked about their specific preferences with respect to hospitalization, intensive care, surgery, cardiopulmonary resuscitation, and artificial ventilation under each of three circumstances: critical illness, terminal illness, and permanent unconsciousness. In addition, they were asked about their wishes with regard to tube feeding in the event of permanent unconsciousness. The surrogates were asked a parallel series of questions in order to determine their general preferences and specific treatment choices on behalf of the patient. Before being questioned about specific preferences, the patients and surrogates were read descriptions of intensive care, cardiopulmonary resuscitation, and artificial ventilation.
Critical illness was defined as a condition of extreme sickness involving a disease that could improve with medical treatment. Terminal illness was defined as a condition in which a person is dying with a disease that cannot get better no matter what the doctor does. Permanent unconsciousness was defined as a condition from which the person will never awaken. In the case of treatment, the respondents could choose (1) to have the treatment, (2) not to have the treatment, (3) to allow their doctors to decide, (4) to allow their families to decide, or (5) to make some other choice of their own. Cue cards labeled with each of the medical conditions, treatments, and possible choices were used during the interview. (The questionnaire is available on request.)
Documentation of Preferences
A statement was prepared for each patient that was based on the preferences expressed during the interview. The statement included the specific choices of treatment, the names of the surrogate decision makers chosen by the patient, and the statement of the patient's general preference (see the Appendix for a sample preference statement).
After the statements had been read to the patients, they were asked whether they still agreed with them and were asked to sign them. If they did not agree with the statements, changes were made before they gave their final signatures. The document was then placed in each patient's nursing home chart, in the section designated for treatment orders, to be used as an advance directive. A copy was also placed in a sealed envelope in the front of the chart, stamped boldly in red ink as follows: "Statement of Patient's Preferences for Care: To Be Transferred with Patient If Discharged to Hospital." In the case of an incompetent patient, the statement of the surrogate's preferences for the patient's care was prepared, signed, and placed in the patient's nursing home chart to be used to direct the patient's future care.
Before inserting the statement in the patient's chart, a research assistant reviewed the chart to verify that the orders it contained were consistent with the wishes expressed in the statement. In particular, if a record included a do-not-resuscitate order that was inconsistent with the patient's or surrogate's stated wishes, this inconsistency was brought to the attention of the attending physician. In these cases, at the physician's discretion, either the preference statement was withheld from the chart because the physician disagreed with the investigator's evaluation of the patient's competence, or the orders in the chart were changed before the insertion of the document.
If a patient returned to the nursing home after a hospitalization, he or she was again presented with the document and asked whether there should be any changes before it was reinserted into the nursing home chart. When a preference statement was reviewed, the patient's competence to make decisions was reevaluated according to the criteria used initially. If the patient was subsequently evaluated as incompetent, the original document was inserted without modification.
Follow-up Data
The nursing home census was reviewed every weekday to identify deaths in the nursing home or hospitalizations. When either of these outcome events occurred, a research assistant reviewed either the hospital discharge summary or the nursing home chart to determine ( 1 ) the use of hospitalization, intensive care, cardiopulmonary resuscitation, artificial ventilation, surgery, or tube feeding, (2) the presence of critical illness, terminal illness (incurable illness with a prognosis of less than six months' survival), or irreversible unconsciousness, (3) the presence or absence of the advance directive in the medical record, and (4) the patient's competence to make choices at the time of the outcome event, as judged on the basis of mental status and level of consciousness as recorded by medical or nursing staff at the time of the event.
All attending physicians in the nursing home who cared for the patients included in the study and all attending physicians who cared for these patients during an outcome event in the hospital were interviewed to determine why there had been any inconsistencies between the advance directive and the actual care provided to the patient. All registered nurses who had worked in the nursing home for at least six months during the study period were interviewed to determine whether they considered the interview and written directive helpful and how the process could be improved.
Statistical Analysis
The demographic characteristics of the patients and the responses of the interviewees were analyzed with use of summary statistics. The effectiveness of the written advance directives was measured in terms of how frequently the directives were available at the time of an outcome event and how frequently the patient's care was consistent with the previously expressed wishes. The unit of analysis was the outcome event, not the individual patient. Because multiple events involving the same patient were not necessarily independent of each other, we performed all analyses twice — once using only the first outcome event for each patient, and a second time using all outcome events. The results of the two analyses were essentially identical and are therefore reported only for the analysis of all outcome events.
To examine which independent variables were associated with treatment that was consistent with advance directives, the Pearson chi-square statistic was used. A logistic regression model was then fitted to determine the joint effect of the factors of interest, with adjustment for any significant demographic variables. Consistency between previous wishes and subsequent treatment was the dichotomous outcome (1 = inconsistent, 0 = consistent). Four main factors were included in the final model: the presence of the advance directive in the medical record at the institution where the outcome event occurred (present or absent), the origin of the advance directive (patient or family), the competence of the patient at the time of the outcome event (incompetent or competent), and the location of the outcome event (nursing home or hospital). Potential confounding variables examined were the circumstances of the event (critical illness, terminal illness, or permanent unconsciousness), sex, race, age, and marital status. A backward elimination procedure was used to remove from the model any potential confounders that did not significantly affect the results of the analysis.
Results
Patients' Characteristics
Two hundred ten eligible patients or their surrogates were asked to participate in the study; 175 (83 percent) did so. The patients who did not participate did not differ significantly in age, race, or sex from those who did participate.
Seventy-two percent of the patients (126) were judged competent to give informed consent. The competent and the incompetent patients had similar demographic characteristics, except that the incompetent patients were slightly older and more often white and female (Table 1Table 1
Characteristics of the Patients.).One hundred forty-two family members or other surrogates participated in the study. Ninety-three persons were related to competent patients, and 49 were related to incompetent patients. The participating surrogates included children (63 percent), spouses (14 percent), siblings (2 percent), other relatives (16 percent), and friends or others (4 percent).
Treatment Preferences
The majority of the competent patients thought that there would come a time when they would want their doctor to stop keeping them alive (72 patients, or 57 percent). Forty-one (33 percent) wanted their doctor to keep them alive as long as possible. The remaining 13 patients (10 percent) did not know how they felt about these statements. As for specific treatment choices, the patients were most willing to receive life-sustaining treatment during a critical illness and least willing to receive such treatment during permanent unconsciousness (Table 2Table 2
Preferences of 126 Nursing Home Residents Regarding Life-Sustaining Treatment.).The family members of the incompetent patients consistently preferred to have life-sustaining treatments withheld from the patients more frequently than the competent patients did for themselves. Thirty-six family members (73 percent) agreed that there would be a time when they would want the patient's doctor to stop keeping the patient alive; six family members (12 percent) disagreed; seven (14 percent) did not know how they felt about this statement. When they were asked about specific treatments, their choices paralleled those of the competent patients, with the inclination to choose life-sustaining treatments diminishing as the condition became less reversible (Table 3Table 3
Preferences of 49 Family Members of Incompetent Nursing Home Residents Regarding Life-Sustaining Treatment.*).Three preference statements were withheld from the charts because of inconsistencies between the wishes expressed and the orders in the chart, or because of inconsistencies within the preference statement.
Outcome Events
During the two-year study period there were 35 deaths in the nursing home and 71 hospitalizations, for a total of 106 outcome events, involving 76 patients. During these events, 134 relevant treatments were provided (Table 4Table 4
Treatments Received by Patients during Outcome Events.). Ninety percent of the hospitalizations involved a state-funded, university-affiliated hospital. The remainder occurred in either a Veterans Affairs hospital or a county hospital.Effectiveness of the Written Advance Directive
An advance directive remained in the nursing home chart for 74 percent of the 106 outcome events, but it was successfully delivered to the hospital and incorporated into the hospital record for only 25 of the 71 hospitalizations. During their interviews, nurses commented that staff turnover was the cause of unfamiliarity with the document and its infrequent transfer to the hospital.
The consistency between the advance directive and the care provided during the outcome event was analyzed for 96 of the 106 events. The remaining 10 events were not analyzed, because they involved circumstances to which the advance directive did not apply — i.e., unwitnessed deaths, illnesses that were not considered critical or terminal, or those that did not involve permanent unconsciousness.
Medical treatment was consistent with the advance directives in 72 of the 96 events (75 percent). Twenty-four events occurred in which care was inconsistent with previous wishes. (A detailed table of all cases of inconsistent care has been deposited with the National Auxiliary Publications Service.*) In six cases care was more aggressive than had been requested, and consisted of ventilation (two cases), surgery (two), cardiopulmonary resuscitation (one), and tube feeding (one). For example, one patient declined artificial ventilation in the directive but had a reversible episode of
See NAPS document no. 04847 for 7 pages of supplementary material. Order from NAPS c/o Microfiche Publications, P.O. Box 3513, Grand Central Station, New York, NY 10163–3513. Remit in advance (in U.S. funds only) $7.75 for photocopies or $4 for microfiche. Outside the U.S. and Canada add postage of $4.50 ($1.50 for microfiche postage). There is an invoicing charge of $15 on orders not prepaid. This charge includes purchase order. respiratory failure during treatment for a seizure. This patient was consequently given artificial ventilation for a brief period. In another example, the family of an incompetent patient had declined surgery in its directive, but subsequently agreed to amputation of the patient's leg because of an open, infected femoral fracture.
Care was less aggressive than had been requested in 18 cases, largely because hospitalization or cardiopulmonary resuscitation was withheld. For example, a patient with end-stage congestive heart failure had requested hospitalization in the directive, but at a time when the patient was no longer competent, the family and doctor believed there was no benefit to be gained from aggressive care, and the patient died in the nursing home. A patient with severe embolic disease requested cardiopulmonary resuscitation in the directive, but after there had been repeated hospitalizations, the family, who had been directed by the patient to decide about hospitalization, refused hospitalization; this patient died in the nursing home without cardiopulmonary resuscitation.
Consistency between previous wishes and patient care occurred less often when the advance directive was present in the medical record than when it was absent (P = 0.045) (Table 5Table 5
Consistency between Advance Directives and Actual Provision of Care, According to the Presence of the Directive in the Medical Record, the Originator of the Directive, and the Patient's Competence and Location at the Time of the Outcome Event.). Advance directives that originated with patients were as effective as those that originated with families in leading to care consistent with previous wishes (Table 5). If a patient was incompetent at the time of an outcome event, care was less likely to be consistent with previous wishes than if the patient was competent (P = 0.014) (Table 5). Finally, care in the hospital was more consistent with patients' previous wishes than care received in the nursing home (P = 0.00003) (Table 5).The results of the logistic regression analysis are summarized in Table 6.Table 6
Adjusted Percentage of Instances of Care Inconsistent with Advance Directives.* A backward elimination of the potential confounders found only marital status to be associated with the outcome, as well as with the four main effects of interest. Therefore, the final model included the presence of the advance directive in the record, the origin of the directive, the patient's competence at the time of the outcome event, the location of the event, and marital status.The risk of receiving a treatment at the time of an event that was inconsistent with the advance directive is given for the four main effects (Table 6). If the advance directive was present in the chart at the time of an event, treatment was inconsistent about 2.3 times more often than when the directive was absent. When the advance directive originated with the patient rather than the family, the treatment for an event was about 3.2 times as likely to be inconsistent. Patients who were incompetent at the time of an event were about four times as likely to receive treatment inconsistent with their directives. Finally, subjects treated at the nursing home at the time of an event rather than in the hospital were about four times as likely to receive a treatment that was inconsistent with their advance directives. Only this last difference reached statistical significance.
Discussion
The results of this study indicate that the treatments that patients received during outcome events were consistent with their previously expressed wishes most of the time. The presence of the written advance directive in the medical record did not facilitate this consistency, however. Inconsistent care occurred more often in the nursing home, when patients were incompetent, and when the advance directive was available.
The study was designed to maximize the possibility of examining the effectiveness of advance directives. A nursing home setting was used because the patient population was considered likely to experience a large number of observable life-threatening events during the study period. The advance directives were placed directly in the patients' charts at the nursing home to minimize difficulty with access to the document. Once an advance directive was placed in the chart, it was not interfered with by the investigators. Thus, the effect of nursing home routine and emergency events on the disposition of the directive could be determined. As other authors have suggested, the directives included both specific and general statements about treatment preferences so that the preferences of patients could be interpreted as clearly as possible.11
The generalizability of the study may be limited by the fact that it was conducted in a single nursing home and almost exclusively in a single acute care hospital. The institutional setting, at least in the nursing home, would tend to make the advance directive more readily available than a noninstitutional setting, whereas compliance with the document might have varied had the study been conducted in several settings.
Why were the advance directives not followed in all cases? Although they may not have been followed in some cases because they were not available at the time of the outcome event, a review of the medical records and interviews with physicians suggest that in many cases there were other compelling reasons. In four cases, the initial preference expressed may have been too restrictive to allow care that was strongly believed to be appropriate at the time of the outcome event, as in the cases in which surgery or brief artificial ventilation afforded the patient substantial benefit. In four other cases the treatment chosen in the directive was not administered because it was not likely to afford benefit. In two cases the patients changed their minds, and in one the family changed its mind. Three families made choices at the time of an outcome event that contradicted the patients' previously expressed wishes. Finally, in two cases the advance directives were not followed because providers were unaware of them.
The logistic regression analysis pointed out that the presence of the written directive in the medical record did not increase the consistency between stated wishes and subsequent care. It should be noted that there was a high rate of consistency between preferences and actual care for all study patients. The failure to improve consistency cannot be explained by this high rate, however, since there was actually a trend toward less consistent care when the directive was present. One might speculate that the high rate of consistency overall was achieved because the interview process itself, in which all study participants engaged, facilitated forethought and communication among patients, families, and care givers. This possibility is supported by the nurses' comments to the effect that the interviews often stimulated patients and families to discuss their treatment preferences with the staff.
The analysis pointed out further that the occurrence of an outcome event in the nursing home rather than the hospital was an independent predictor of inconsistency between the advance directive and subsequent care. One might speculate that the approach to medical care in a long-term care facility is naturally less aggressive than it is in an acute care hospital, and most of the inconsistencies were in the direction of undertreatment. Physicians may decide not to use life-sustaining treatment in the nursing home and may feel less pressure to do so, despite patients' wishes, because of the small likelihood of benefit from such treatments, particularly cardiopulmonary resuscitation, in this setting.12 In addition, it may be much more difficult, even with some effort, to maintain a vigilant concern for autonomy when caring for a population of patients who are often unable to exercise choice.
These study findings imply that there are limits to the ability of written advance directives to enhance the autonomy of incapacitated patients. To improve the effectiveness of such directives, they must be applicable and accessible, and they must be carefully heeded. To make them more applicable, patients might be advised to be cautious about refusing future treatments, such as surgery or ventilatory support, for treatable conditions and to anticipate that there will come a time when cardiopulmonary resuscitation will not prevent death. For advance directives to be heeded adequately, all personnel in a variety of institutional settings must be alerted to them and be concerned about their proper transfer, particularly in emergencies. If a written document alone is ineffective, perhaps discussions of treatment preferences during conferences on patient care would increase its effectiveness.
Beyond this, the results suggest that regardless of how specific and accessible they are, written directives cannot be expected to anticipate all situations or all changes in attitude. These findings imply that the durable power of attorney should be given much more serious consideration as a mechanism for facilitating the autonomy of incapacitated patients.
Finally, some of the care decisions that were inconsistent with advance directives appeared to be based on principles of beneficence and proportionality. Thus, the data suggest that in caring for incapacitated patients, physicians balance respect for autonomy with other competing ethical principles in order to make what they believe are the wisest decisions. This raises the possibility that advance directives may on rare occasions pose an ethical and legal dilemma, because strict adherence to them precludes the opportunity to balance autonomy against other valuable ethical principles.
It should not be inferred from this discussion that the effort to maintain autonomy through the use of advance directives is futile or valueless. Rather, the use of such directives is in its infancy, and we need to define and grapple with their limitations before we can use them optimally.
We are indebted to the following medical students at the University of North Carolina at Chapel Hill for invaluable assistance in conducting interviews: Elizabeth Bell, Philippa Charleton, Elizabeth Crow, Mary Elizabeth Froelich, David Habel, Michelle Hand, and Arthur Payne; to Rebecca Summerford for her assistance; and above all, to the patients, families, physicians, and nursing home staff who made this project possible.
Source Information
From the Departments of Medicine (M.D., L.I.S., J.M.G., J.L.S., C.G.P., D.M.E.) and Epidemiology (L.I.S., F.H.), University of North Carolina at Chapel Hill, and the Department of Health Services, University of Washington, Seattle (D.L.P.). Address reprint requests to Dr. Danis at the Division of General Medicine and Clinical Epidemiology, Campus Box 7110, 5025A Old Clinic Bldg., University of North Carolina, Chapel Hill, NC 27599–7110. Supported by grants from the Kate B. Reynolds Foundation and the Department of Medicine of the University of North Carolina at Chapel Hill.
Appendix: Sample Statement of Patient's Preferences
To my Doctor:
While I have been at—, I have discussed my wishes concerning my medical treatment in the event that I become extremely ill. I did this in the hope that if I made my wishes known beforehand, it would be easier for my doctors to know my preferences at a time when I am unable to express them.
If I become critically ill:
I want to be hospitalized.
I want to go into intensive care.
I want to have my heart revived if my heart stops.
I want to have surgery.
I want to be put on a breathing machine.
If I become terminally ill:
I want to be hospitalized.
I want my family members to decide whether I shall go into intensive care after they talk with my doctor.
I want my doctor to decide whether to revive me if my heart stops.
I want my family members to decide whether I shall have surgery after they talk with my doctor.
I want my family members to decide whether I shall be put on a breathing machine after they talk with my doctor.
If I am in an irreversible coma:
I want to be hospitalized.
I want my family members to decide whether I shall go into intensive care after they talk with my doctor.
I want my doctor to decide whether to revive me if my heart stops.
I want my family members to decide whether I shall have surgery after they talk with my doctor.
I do not want to be put on a breathing machine.
I want my family members to decide whether I shall be fed through a tube after they talk with my doctor.
If I am unable to make decisions for myself, I would like the following person to make necessary decisions on my behalf:
1. name (relationship) address
phone: (home) (work)
If you cannot reach— — — — —, I would like the following person to make the necessary decisions on my behalf:
2. name (relationship) address
phone: (home) (work)
There will be a time when I want my doctor to stop keeping me alive.
I have provided this information in the hope that it will be easier to respect my wishes about my medical care at a time when I am unable to express them.
Patient — — — — —name (printed) (signature) (date)
Witness — — — — — name (printed) (signature) (date)
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