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(Chest. 2005;127:2180-2187.)
© 2005 American College of Chest Physicians

Treatment Preferences for Resuscitation and Critical Care Among Homeless Persons*

Wendi M. Norris, MD, MSW; Elizabeth L. Nielsen, MPH; Ruth A. Engelberg, PhD and J. Randall Curtis, MD, MPH, FCCP

* From the Division of Pulmonary and Critical Care Medicine (Dr. Norris, Ms. Nielsen, and Dr. Curtis), Department of Medicine, School of Medicine, University of Washington; and Program in Social and Behavioral Sciences (Dr. Engelberg), Department of Health Services, School of Public Health, University of Washington, Seattle, WA.

Correspondence to: J. Randall Curtis, MD, MPH, FCCP, Division of Pulmonary and Critical Care Medicine, Harborview Medical Center, Box 359762, 325 Ninth Ave, Seattle, WA 98104-2499; e-mail: jrc{at}u.washington.edu


   Abstract
TOP
 Abstract
Introduction
 Materials and Methods
 Results
 Discussion
 References
 
Context: Homeless people are at increased risk of critical illness and are less likely to have surrogate decision makers when critically ill. Consequently, clinicians must make decisions independently or with input from others such as ethics committees or guardians. No prior studies have examined treatment preferences of homeless to guide such decision makers.

Design: Interviewer-administered, cross-sectional survey of homeless persons.

Setting: Homeless shelters in Seattle, WA.

Participants: Two hundred twenty-nine homeless individuals with two comparison groups: 236 physicians practicing in settings where they are likely to provide care for homeless persons and 111 patients with oxygen-dependent COPD.

Measurements: Participants were asked whether they would want intubation with mechanical ventilation or cardiopulmonary resuscitation in their current health, if they were in a permanent coma, if they had severe dementia, or if they were confined to bed and dependent on others for all care.

Results: Homeless men were more likely to want resuscitation than homeless women (p < 0.002) in coma and dementia scenarios. Homeless men and women were both more likely to want resuscitation in these scenarios than physicians (p < 0.001). Nonwhite homeless were more likely to want resuscitation than white homeless people (p < 0.033), and both were more likely to want resuscitation than physicians (p < 0.001). Homeless are also more likely to want resuscitation than patients with COPD. The majority (80%) of homeless who reported not having family or not wanting family to make medical decisions prefer a physician make decisions rather than a court-appointed guardian.

Conclusions: Homeless persons are more likely to prefer resuscitation than physicians and patients with severe COPD. Since physicians may be in the position of making medical decisions for homeless patients and since physicians are influenced by their own preferences when making decisions for others, physicians should be aware that, on average, homeless persons prefer more aggressive care than physicians. Hospitals serving homeless individuals should consider developing policies to address this issue.

Key Words: homeless • mechanical ventilation • resuscitation • treatment preferences


   Introduction
TOP
 Abstract
 Introduction
Materials and Methods
 Results
 Discussion
 References
 
Between 250,000 and 3.5 million people in the United States are homeless,123 and homeless people are at increased risk of death from many causes.4567 Among those hospitalized, the homeless have increased lengths of stay and more costly care than those who are domiciled.89 Medical problems commonly seen among the homeless include hypertension, diabetes, peripheral vascular disease, respiratory disease, chronic liver disease, infectious diseases, and chronic renal disease.101112131415161718192021222324 With an increased risk for diseases that may precipitate a critical illness, homelessness is likely an important risk factor for admission to the ICU. Furthermore, homeless individuals are more likely to have schizophrenia, depression, and substance dependence than domiciled control subjects,25 and each of these may interfere with decisional capacity and further increase the risk of being unable to express treatment preferences during an acute illness. When homeless people are admitted to the ICU, decisions frequently must be made about the level of care they receive. Many patients are not able to participate in such decisions due to the severity of their illness,26 and homeless individuals are less likely to have family or friends to be surrogate decision makers. Consequently, their health-care providers must make decisions, either on their own or with input from other bodies such as ethics committees or court-appointed guardians. In these situations, homeless persons are at increased risk of having life support decisions made that do not reflect their wishes. Although persons with lower income or less education prefer more aggressive treatments,272829 no previous studies have examined the treatment preferences of homeless individuals.

Previous studies have suggested that physicians are not good at predicting patients’ resuscitation preferences. The Study To Understand Prognoses and Preferences for Outcomes and Risks of Treatment30 showed that communication between physicians and patients was suboptimal even when patients were able to communicate with their physicians, and that a minority of physicians knew when their patients did not want cardiopulmonary resuscitation (CPR). Schneiderman and colleagues31 found that physicians’ estimates of patients’ preferences for life-sustaining treatments are closer to physicians’ own preferences than to those of their patients.

Our study examines the treatment preferences of homeless individuals to provide health-care teams and organizations with information to help in making decisions or setting policies about withholding or withdrawing life support. For comparison, we report the treatment preferences of physicians likely to be providing care for homeless persons and of patients with oxygen-dependent COPD. We also asked homeless participants whom they would want to make decisions for them if they were unable to make decisions for themselves.


   Materials and Methods
TOP
 Abstract
 Introduction
 Materials and Methods
Results
 Discussion
 References
 
The study is a cross-sectional survey of homeless persons in Seattle, WA, and of internal medicine, surgery, and neurology attending physicians practicing at the University of Washington-affiliated hospitals. In addition, we provide data from a sample of patients with oxygen-dependent COPD recruited from the clinics of the University of Washington hospitals. The University of Washington Human Subjects Committee approved all study procedures.

Recruitment of Homeless Participants
Our sample was a convenience sample of homeless men and women (n = 229) from Seattle shelters. We included men and women who were in the shelters during the days that interviewers were present, who were > 18 years old, and who spoke English or Spanish. Flyers were posted in the shelters’ common areas, and announcements were made notifying residents of the survey.

We recruited male participants from a shelter that houses 212 men each evening. Men must be > 50 years old to use this shelter and may continue to use the shelter provided they return each evening. We recruited female participants from two women’s shelters: (1) a day shelter for women > 18 years old serving 60 women per day, and (2) a shelter for women > 18 years old serving 32 women per evening. We returned to each shelter on consecutive days until we had interviewed all people willing to participate. Each of these shelters has a relatively stable clientele over a 1- to 2-week period, allowing us to estimate approximate participation rates based on the number of participants divided by the number of homeless persons served during the study period.

The questionnaire was interviewer administered to homeless participants to prevent illiteracy from excluding participation. Participants received a coupon redeemable for coffee or food. We obtained anonymous consent after reading an information sheet describing the research purpose and procedures.

Recruitment of Physicians
An information sheet and a shortened survey were sent to all university attending neurologists (n = 42) and surgeons (n = 58) and a random selection of internists (n = 200 of 589 total), for a total of 300 possible participants. These physicians, as a group, staff a university medical center, county hospital, and Veterans Affairs hospital, and provide care for the majority of homeless persons in Seattle. The surveys were distributed by mail. Anonymous consent was assumed if the questionnaire was returned. In order to target repeat mailings, we asked physician participants to mail separately a postcard with a respondent number if they had returned the survey or did not want to participate. A reminder postcard and a second complete mailing were sent to physicians who had not returned the postcard. Of the 300 questionnaires mailed, 10 were sent to physicians no longer at the university and 1 was sent to a nurse practitioner; thus, the total number of eligible physicians was 289. Physicians also received a coupon redeemable for coffee or food.

Recruitment of Patients With COPD
Patients with oxygen-dependent COPD were recruited in Seattle as described previously.3233 In brief, patients were eligible if they were > 18 years old, spoke English, had a diagnosis of COPD, and had been prescribed oxygen therapy. Patients were identified through pulmonary clinics in three hospitals (university, county, and Veterans Affairs teaching hospital) and through an oxygen delivery company. Questions were interviewer administered for these patients. Of 115 patients participating, 111 patients completed the treatment preference questions.

The Questionnaire
Participants were asked whether they would want intubation and mechanical ventilation and whether they would want CPR in four health states: current health, permanent coma, dementia unable to recognize their family or friends, or bed-bound and dependent on others for all care. The response choices for the questions were: "definitely no," "probably no," "probably yes," and "definitely yes." These questions have been previously validated among patients with advanced AIDS,3234 and among patients with oxygen-dependent COPD.33

Basic demographic information was obtained including gender, age, race, and education, as well as health status; whether participants were in contact with family; and whom they would want to make medical decisions for them if they were too sick to make decisions. The final portion of the questionnaire was the six-item Orientation-Memory-Concentration Test, a validated measure of cognitive impairment.35 Participants with severe impairment (score ≥ 20) were excluded (n = 1).

We used an abbreviated version of the treatment preference questionnaire with physicians to maximize the response rate. The questionnaire addressed whether physicians would want intubation and mechanical ventilation or CPR if they were in a permanent coma or if they had dementia and did not recognize family or friends. We also included a few demographic questions. The Human Subjects Committee requested we not ask physicians’ gender or race since these characteristics could identify participants within some specialties.

For homeless participants, the questionnaire was administered in either English or in Spanish. The Spanish versions of the information sheet and questionnaire were translated from English to Spanish, then from Spanish back to English by different interpreters. Discrepancies were resolved by consensus with the interpreters and two bilingual physicians.

Statistical Analysis
Our goal was to define the proportion of homeless participants who would want life support with 95% confidence intervals that had a width of 5%. An a priori sample size of 200 participants was chosen to provide these confidence intervals and to allow for multivariate analyses with six potential predictors. The analyses were conducted with treatment preferences dichotomized by combining "definitely no" and "probably no" and combining "probably yes" and "definitely yes" into the more clinically relevant categories of "no" and "yes." Analyses were also performed for the four response categories, and there were no differences in the results (results not shown). Because homeless participants were recruited from gender-specific shelters, we examined homeless men and women separately for all analyses. For comparing treatment preference between groups, we used the {chi}2 test. For multivariate analyses, treatment preference was the outcome variable, and predictors were added to the model using a forward stepwise logistic regression. Potential predictor variables were gender, race, age, educational level, number of months homeless, and subjective health status. Statistical significance was set at a two-tailed p value of ≤ 0.05.


   Results
TOP
 Abstract
 Introduction
 Materials and Methods
 Results
Discussion
 References
 
Response Rates and Demographic Characteristics
We interviewed 230 homeless people between January and March 2003. One subject was removed based on the cognitive screen, leaving 229 participants. Since the questionnaires were anonymous, actual response rates could not be determined. However, based on the number of clients in the shelters on a single day (304 possible total) and assuming everyone in each shelter was aware of the study and that the homeless population in each shelter was stable over the 1 to 7 days we were present, we estimate the participation rate was 76% (230 of 304 persons). We surveyed 289 attending physicians within our institution, and 236 of these physicians returned the questionnaire for a response rate of 82%.

Table 1 shows the characteristics of the homeless and physician participants. Among the homeless, the men were older, homeless longer, and less likely to be white than women. The most common educational level among the homeless was "some college or trade school." Physicians had a mean age of 46.8 years (SD, 10), and the group was comprised of 151 internists (64%), 51 surgeons (22%), and 34 neurologists (14%).


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  		Table 1.. Demographic Characteristics of Homeless Participants*

 
Treatment Preferences of Homeless Participants and Physicians
Table 2 shows treatment preferences among the homeless and physician participants and indicates the proportion that would not want CPR or mechanical ventilation in each health state. There were no significant differences between homeless men and women regarding treatment preferences in their current health or if they were bed-bound and dependent on others for care.


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  		Table 2.. Preferences for Not Receiving Intubation and Mechanical Ventilation or CPR Among Homeless Men and Women and Physicians

 
Both homeless participants and physicians were asked if they would want CPR or mechanical ventilation if they were in a permanent coma. Homeless women were less likely to want CPR or mechanical ventilation than homeless men (p < 0.002). Both homeless men and women were more likely to want CPR or mechanical ventilation than physicians (p < 0.001). Similarly, in the scenario of severe dementia, homeless men were more likely to want CPR or mechanical ventilation than homeless women (p < 0.002), and both were more likely to want CPR or mechanical ventilation than physicians (p < 0.001).

Table 3 shows treatment preferences by race of the homeless. Nonwhite homeless participants were generally more likely to want resuscitation than white homeless participants, and both were more likely to want resuscitation than physicians. Differences between nonwhite homeless and white homeless persons were most consistent for the permanent coma and severe dementia scenarios.


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  		Table 3.. Preferences for Not Receiving Intubation and Mechanical Ventilation or CPR Among Homeless White and Nonwhite Persons and Physicians

 
Because significant differences were found by gender and race, we used logistic regression to determine whether gender and race were independent predictors of treatment preferences and whether these differences were confounded by age, education, subjective health status, and duration of homelessness in months. Gender and race remained significant predictors of treatment preferences in coma and dementia scenarios after controlling for other variables. Age, months homeless, education, and health status were not consistent predictors of preferences.

Preferences for Surrogate Decision Maker Among Homeless Persons
The homeless participants were asked whether they were in contact with their families, whether they would want family members to make decisions for them and, if not, who they would want to make these decisions. The majority of the homeless participants reported contact with their families and would want a family member to make medical decisions for them if they were unable to make decisions. However, for the 81 participants who did not want their families to make decisions or did not have family, a majority would want their primary care physician or hospital physician to make medical decisions for them (Table 4 ). In addition, when these participants were given a choice between a physician and court-appointed guardian to make decisions, 80% chose a physician.


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  		Table 4.. Preferences Regarding Surrogate Decision Makers for Homeless Participants*

 
Treatment Preferences of Homeless Persons Compared to Patients With Severe COPD
Patients with oxygen-dependent COPD were surveyed about their treatment preferences using the same questions.32 The patients with COPD had a mean age of 67.2 years, 72% were male, and 84% were white. There were no significant differences between men and women in regards to their treatment preferences.

Homeless men were more likely to desire resuscitation than men with COPD (p < 0.001). Homeless women were more likely to want CPR in their current health than women with COPD, but did not differ significantly for other treatments or health states. Overall, homeless participants were more likely to prefer resuscitative measures than were those with oxygen-dependent COPD (p < 0.001; Table 5 ). Finally, physicians were less likely to want CPR or mechanical ventilation in permanent coma and dementia scenarios than patients with oxygen-dependent COPD (p < 0.001).


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  		Table 5.. Preferences for Not Receiving Intubation and Mechanical Ventilation or CPR Among Homeless Participants and Patients With Oxygen-Dependent COPD

 

   Discussion
TOP
 Abstract
 Introduction
 Materials and Methods
 Results
 Discussion
References
 
If a homeless, critically ill patient does not have an available and willing surrogate decision maker, is unable to speak for him or herself, and has little chance for meaningful recovery, physicians are placed in the position of making difficult decisions about the use of life support. Physicians may make these decisions independently, with consultation from another physician, with the assistance of hospital committees such as an ethics committee, or with a court-appointed guardian. Although there are no data to document the frequency of these approaches, our experience suggests that each of these options is currently exercised. Prior research suggests that physicians who make these decisions independently may make these decisions based on their own preferences.31 Our study shows that the homeless participants would, on average, want more aggressive care than the physicians making decisions for them. Homeless participants also wanted more aggressive care, on average, than patients with oxygen-dependent COPD, suggesting this is not solely an effect of the medical training and experience of physicians. Although the homeless persons had better health status than patients with oxygen-dependent COPD, we found no association between health status and treatment preferences among the homeless or, as reported previously, among patients with oxygen-dependent COPD.33 Therefore, these data suggest that if decisions for homeless persons are based on the preferences of either physicians or of patients with chronic diseases, homeless persons may receive less aggressive treatment than they would choose for themselves. Obviously, these data do not provide physicians with guidance concerning the preferences of an individual homeless person; homeless individuals represent a heterogeneous group with heterogeneous treatment preferences. Furthermore, it is important to note that more than half of homeless persons surveyed reported they would not want mechanical ventilation or CPR in the event of a permanent coma or dependence on others for activities of daily living. Nonetheless, homeless persons as a group prefer more aggressive treatment than patients with severe COPD or physicians and this should be taken into account during decision making regarding their care.

Although this study cannot be used to definitively make decisions regarding care for individual patients, it does provide some direction regarding how these decisions should be made. For homeless persons who do not have or want families to make medical decisions for them, approximately half would want either the hospital physician or primary care physician to be the decision maker. None of our participants choose a court-appointed guardian from a list of six potential decision makers, and only 20% chose a court-appointed guardian when given a choice of either a physician or a guardian. Thus, our study supports having physicians play an important role in decision making for homeless persons without surrogate decision makers, but suggests that these decisions should not be made based solely on physicians’ personal treatment preferences. We believe these data suggest that institutions should consider developing an explicit policy for involving additional persons, such as hospital ethics committees and/or advocates for homeless persons. The goal of such a policy would be to ensure a similar approach for all homeless persons without surrogate decision makers (as well as others without surrogates) at a given hospital, to attempt to represent the interests of homeless persons, and to relieve physicians of the burden of making these decisions by themselves. Additional policy implications might include asking every patient at the time of hospital admission who their surrogate decision maker would be and how to contact that person, much like the query about advanced directives mandated by the Patient Self-Determination Act.

Although no prior studies that have examined the treatment preferences of homeless persons, other studies have shown similar differences by gender and race/ethnicity. Studies have found that men prefer more aggressive life-sustaining treatment than women,3637 and that African Americans are more likely to want resuscitation than white Americans.272829

One of the limitations to our study is that the homeless participants represented a convenience sample. Although we estimate that 76% of eligible persons participated, we do not really know this proportion and cannot estimate how our findings might be biased by nonparticipation. In addition, there may be differences between homeless persons who use the particular shelters we studied and those who do not. The proportion of homeless participants who were women was determined by the recruitment method because the shelters are segregated by gender. There may also be regional differences in treatment preferences; therefore, these findings may not generalize to other areas and ethnicities not represented in our study. Of note, the distribution of race, educational level, and gender are similar to other studies of homeless persons,38394041 suggesting that potential biases based on these characteristics are unlikely to have an important influence on the results. A second limitation is that not all homeless persons surveyed were without a family member that they would want to be their decision maker. However, we examined preferences of all homeless participants because our experience suggests that, even for those who reported having family, some of these family members cannot be found and others will refuse to participate in decision making. A third limitation is that we used comparison groups (physicians and patients with oxygen-dependent COPD) rather than a true "control" group. We chose these comparison groups because we thought they provided insight into the clinical implications of our data rather than "controlling" for homelessness or some other characteristic of our homeless sample. Finally, it is important to acknowledge that homeless persons’ understanding of treatments and health scenarios was likely different than that of physicians. Such differences in understanding likely play an important role in the differences in preferences. Nonetheless, the level of understanding during this interviewer-administered survey may, unfortunately, be similar to that achieved during a standard discussion about advanced directives in a clinic setting and therefore these differences in preferences have clinical relevance. In addition, the differences between homeless persons and patients with COPD support the finding that homeless persons may choose more aggressive treatments than others in our society.

With the current political and social trends, it is likely that more people will become homeless in the coming years.4243 We believe that our data suggest that this vulnerable population should receive special attention when making decisions concerning withholding and withdrawing life support to ensure that their rights are honored. As with any patient, primary care physicians should address preferences regarding end-of-life care with homeless patients in the primary care setting and, whenever possible, a primary care physician should be called on to help hospital physicians make such decisions. Similarly, those patients with decisional capacity on admission to the hospital should be queried about resuscitation preferences and surrogate decision makers. In addition, organizations serving homeless persons should consider the options for obtaining advance directives, especially durable power of attorney for health care, for their clientele and transmitting this information to health care institutions. Finally, physicians caring for homeless persons should recognize that, as a group, homeless persons prefer more aggressive life-sustaining treatments than physicians and some other patient populations.


   Footnotes
 
Abbreviation: CPR = cardiopulmonary resuscitation

Project support was provided by a Clinical Research Trainee Award in Critical Care from the CHEST Foundation. Dr. Curtis is supported by a K24 Award from the National Heart Lung and Blood Institute (K24 HL68593).

Received for publication July 20, 2004. Accepted for publication November 9, 2004.


   References
TOP
 Abstract
 Introduction
 Materials and Methods
 Results
 Discussion
 References
 

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