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© 2003 American Society for Clinical Oncology Approaching the End of Life: Attitudes, Preferences, and Behaviors of African-American and White Patients and Their Family Caregivers
From the Albert Einstein Healthcare Network, Philadelphia, PA. Address reprint requests to Etienne Phipps, PhD, Albert Einstein Healthcare Network, Center for Urban Health Policy and Research, 1 Penn Blvd, Philadelphia, PA 19144; email: phippst{at}einstein.edu.
Purpose: To investigate differences in attitudes, preferences, and behaviors regarding end of life in terminally ill patients and their designated family caregivers. Patients and Methods: 68 African-American and white patients with stage III-B or IV lung or stage IV colon cancer and 68 patient-designated family caregivers interviewed between December 1999 and May 2001. Results: White patients were more likely to have a durable power of attorney (34% v 8%, P = .01) and were more likely to have a living will (LW; 41% v 11%, P = .004) than were African-American patients. More African-American than white patients desired the use of life-sustaining measures (cardiopulmonary resusitation [CPR], mechanical ventilation, tube feeding) in their current condition (all P > .12). In a near-death condition, African-American patients were more likely than white patients to desire each of the life-sustaining measures (all P < .004). There was no patient-caregiver agreement beyond chance regarding preferences for initiation of CPR, tube feeding, or mechanical ventilation in the patient’s current condition or in the near-death condition. In the near-death condition in patients without LWs, there was disagreement in 46% of patient-caregiver pairs about CPR, in 50% about mechanical ventilation, and in 43% about tube feeding. Conclusion: Although most patients and families endorse the primacy of the patient in decisions at end of life, the majority do not take supporting actions. Disagreements between patients and families about the use of life-sustaining measures in patients without LWs may result in patients’ preferences being superseded at end of life.
THE END-of-life movement in the United States emphasizes the importance of honoring patient wishes regarding the use of life-sustaining interventions and promoting the dignity of the dying. However, numerous obstacles can hinder delivery of care at end of life that meets these standards.1 Ethical and legal guidelines support the individual’s role in medical decision making at end of life, including decisions to forgo life-sustaining treatment, even when it may result in one’s death.2 The Patient Self Determination Act, passed in 1991, requires that all states recognize advance directives such as living wills and that all institutions receiving aid from Medicare/Medicaid provide information and training to patients and providers concerning the use of advance directives. This legislation was intended to strengthen the rights of patients to continue to express their wishes regarding the use of life-sustaining measures when they become terminally ill or permanently unconscious.3,4 In the years since the Patient Self Determination Act was enacted, however, studies5–7 have demonstrated that only a small percentage of patients have advance directives and that these percentages are even smaller among minority patients. Patients at end of life who are unable to communicate and who have not documented their treatment preferences through an advance directive are vulnerable to receiving unwanted interventions. This vulnerability is heightened for patients without family and without a written advance directive. In such cases, medical decisions usually are made on the patient’s behalf by an individual physician, close friend, or acquaintance. American medical ethics places a premium on patients serving as their own decision makers. A patient’s ability to accept or refuse treatment is derived from judicially mandated rights to self-determination, privacy, and liberty interests4,8,9 based on the idea that "every human of adult years and sound mind has a right to determine what shall be done with his own body."10 Indeed, although the notion of autonomous decision making is one that is challenged daily in clinical settings across the country as decisions are made for dying patients by others, there is still an underlying societal belief in the importance of the individual and the rights of individuals to have a say in their medical treatment. To better understand the importance of patient autonomy in the lives of patients and families confronting terminal disease, we designed a prospective study involving African-American and white cancer patients and their family caregivers. The aim of the study was to investigate differences in attitudes and behaviors associated with supporting patient autonomy. We sought to answer the following questions: Who completes advance directives (LWs) and proxy directives (durable powers of attorney) and why? Are there differences between African-Americans and whites in terms of preferences for use of specific life-sustaining measures (cardiopulmonary resuscitation [CPR], mechanical ventilation, enteral feeding tubes) in the patient’s current advanced disease state and in the scenario in which the patient would be near death? To what extent do patients and their caregivers discuss the patient’s preferences for initiation of those life-sustaining measures? To what extent do patients and their caregivers agree about the use of those measures for the patient? We focused on African-American and white patients diagnosed with advanced lung cancer (stage III-B or IV) or colon cancer (stage IV) and their family caregivers. Although those diagnostic categories and stages were chosen because of their similarly poor projected survival estimates and perceived similarity in end-of-life issues, it is recognized that physicians’ ability to estimate survival for individual patients is limited.11
"The Cultural Variations Study" investigates differences in approaches, worldviews, and behaviors regarding end-of-life issues in terminally ill patients and their designated family caregivers. The family caregiver is defined as the person most knowledgeable about the patient’s health status and most involved in their care. The study uses a combination of quantitative and qualitative methods (based on open-ended questions and follow-up probes) to examine decision making at the end of life. The study was approved by the institutional review board of the Albert Einstein Healthcare Network in Philadelphia. Written informed consent was obtained from all participants. We conducted a prospective study of African-American and white (not of Hispanic origin) patients with advanced lung or colon cancer (American Joint Commission on Cancer stage III-B or IV lung cancer and stage IV colon cancer) and their patient-designated family caregivers. Patients were identified in one of four ways: from the Albert Einstein Cancer Center office schedule, from the tumor registry, from the Cancer Center Hospice program, and from oncologists and other physicians. Permission to contact the patient and confirmation that the patient met the inclusion criteria were obtained from the attending physician of record. To be considered for the study, patients were required to have one of the above diagnoses, be capable of providing informed consent, have an expected survival of at least 1 month, and be either African-American or white (not of Hispanic origin). In addition, the patient needed to identify a caregiver, usually a family member, who was also willing to participate and able to provide informed consent. One hundred ninety-eight eligible patients were initially identified from the sources identified above. Thirty-nine were deceased by the time of contact. Of the 159 potentially eligible patients, 91 patients (and their caregivers) were excluded. Reasons for exclusion were the following: patient unable to be located after repeated attempts to locate (11 patients: nine African-Americans [AA], two whites; six females), patient died before first scheduled interview (20 patients: 19 African Americans, one white; four females), patient determined unable to provide informed consent at the time of the first interview (six patients: three African Americans, three whites; three females), patient too weak or unable to communicate verbally (two patients: two African Americans, one female), patient did not have identified caregiver (one patient: one white male), patient was a personal acquaintance of principal investigator (one patient: one white male). In addition, 36 patients refused to participate (22 African Americans, 14 whites; 17 females). Fourteen caregivers refused (eight African Americans, six white males, 10 females) precluding enrollment of the patient. Thus, we report our results based on 68 patient-caregiver pairs or a total of 136 consenting study participants. Data were gathered from patients’ medical records and from in-person interviews with patients and patient-identified caregivers. To standardize presentation of questions, interviewers were trained in the use of the interview protocol through small-group didactic sessions and in videotaped sessions with a simulated patient and caregiver pair. Interviewers were matched with the ethnicity of the patient in an effort to promote an optimal dialog about these difficult topics. Medical baseline data obtained included diagnosis and stage, whether patient was presently receiving active treatment for his/her cancer, and ECOG performance status. Consenting patients and their designated family caregivers were interviewed separately to ensure that responses by one would not be influenced by the presence of the other. Interviews were audiotaped and transcribed verbatim.
Interviews
Statistical Analysis
Qualitative Analysis Transcripts of the audiotaped interviews were processed for coding and analysis using Atlas-ti, a software package for computer-assisted qualitative data analysis.13 Reliability of codes was established using Kappa to measure interrater reliability. Systematic coding of all transcripts enabled the research team to categorize reasons that patients and caregivers cited in response to their answers to discrete questions such as "Do you have a living will?" and "Can you tell me why you have one (or why not)?" Reasons cited in this report are the coding categories and are not study participants’ actual words, except where noted. (See Appendix 2 as an example.)
We report results on 68 patients and 68 patient-identified family caregivers (Table 1  ). African-American and white patients in our study group were similar in terms of median age, education, and income. More African-American patients were receiving treatment for their cancer.
Overall, caregivers were mainly the child of the patient (36% of caregivers of African-American patients v 35% of caregivers of white patients) and partners or spouses of the patient (31% of caregivers of African-American patients v 41% of caregivers of White patients). Eighty percent of all caregiver participants were female; median age was 53 years. African-American caregivers were similar to white caregivers in terms of age and education. A greater percentage of African-American caregivers were female (92% v 69% of white caregivers), and 24% of African-American caregivers reported a family income of less than $12,000 compared with none of the white caregivers. Patients who refused to participate in the study (n = 36) were similar in age (median age, 73 years) and education level to participants. Fifty percent of refusers were female, and 67% of refusers were African-American (data not displayed). Twelve caregivers, on the initial telephone call by researchers seeking to contact the patient, refused to participate in the study. Of these, 67% were African-American and 83% were female. At this initial telephone contact, caregivers refused for the following reasons: concerns about the patient’s physical and emotional health, caregiver feeling overwhelmed with caring for the patient with no time or energy to participate in a study with no direct benefit to the patient’s health, and caregiver dissatisfaction with medical care currently being provided to the patient. Although more than one of these reasons were often given as reasons caregivers refused, dissatisfaction with care being provided to the patient was viewed by the research team to be the most common feature distinguishing caregiver refusers from caregiver participants. Ninety percent of all patients and 68% of all caregivers responded that the patient should be the primary decision maker. Given this large proportion of respondents that favored the patient as decision maker, we investigated what relevant behaviors or actions were taken. This included questions regarding the completion of formal documentation of specific preferences through the completion of a LW or completion of a proxy directive appointing another to make decisions on the patient’s behalf, a durable power of attorney for healthcare (DPOAH), as well as verbal communication of patient wishes regarding end of life.
Who Completes Living Will and Proxy Directives (Durable Powers of Attorney) and Why? Twenty-eight percent of females had a LW, compared to 19% of males (P = .6), and 28% of females also had a DPOAH, compared with 7% of males (P = .06). Older females were more likely than younger females to have both a signed LW (rho = 0.42, P = .007) and a DPOAH (rho = 0.35, P = .03), but there were no such associations in males. Whether a patient had an LW or DPOAH was not associated with education or income level. In response to open-ended questions about why patients did or did not have an advance planning document, either an LW or a DPOAH, we found the following: Among the minority who did have either an LW or a DPOAH, the top reasons cited were to exercise control over the future and to avoid confusion about treatment preferences. Other less commonly cited reasons were past or personal experience (with a terminal illness) and to protect or shield loved ones (from having to make difficult treatment decisions). For patients who did not have an advance care planning document, the most commonly cited reason was "no one has brought it up to me" or "it hasn’t come up," indicating that patients saw the initiative as coming from outside of themselves (external locus of control). Other reasons cited included the belief that formal documentation was not needed until they were near the end, concerns about emotional distress for either patient or family in discussing the topic of the patient’s illness and treatment preferences; and assumption that the patient’s family would know his/her treatment preferences without the need for formal documentation.
Are There Differences Between African-Americans and Whites in Terms of Preferences for Use of Specific Life-Sustaining Measures?
To What Extent Do Patients and Their Caregivers Discuss the Patient’s Preferences for Initiation of Life-Sustaining Measures? Sixty-one percent of patients reported that they had discussed their treatment preferences for life-sustaining measures with others (69% among white patients and 54% among African-American patients). Of those patients who had discussed their treatment preferences, all had done so with their family caregiver and/or other family members. Only one patient said he had discussed his preferences with his physician. The most commonly cited reason for discussing these preferences related to the closeness of the family (close family relationship). Other reasons for discussing treatment preferences included desire to have one’s treatment preferences known and past experience with the serious illness of a loved one. The primary reasons for not discussing preferences for life support were the same as those given for not having advance planning documents; for example, that no one had initiated a discussion with them, or that a discussion about their treatment preferences could wait until their condition worsened.
To What Extent Do Patients and Their Caregivers Agree About the Use of Those Measures for the Patient?
Patients Without LWs
Almost all African-American and white patients and the majority of African-American and white caregivers felt that the patient should be the primary decision maker in care at end of life. This view, however, was not usually accompanied by actions taken that ultimately supported the primacy of the patient’s wishes at end of life. Completion of formal documentation, either LWs or durable powers of attorney, are actions intended to support patient autonomy and the patient’s preferences for life-sustaining treatment when they are unable to communicate these preferences themselves. We found that white patients were more likely to have completed some form of documentation than were African-American patients, findings that have been reported by others.5–7 Reasons for not completing formal documentation have been less well reported. In our study, we found no evidence that lack of knowledge about LWs or proxy directives was a reason for patients not completing such documents. Further, we identified other reasons for not having completed any formal documentation that included patients’ concerns about the emotional distress for either self or family, their feeling that they did not need to engage in advance care planning at this time, or their view that the initiative for advance care planning needed to come from someone else. These reasons highlight the importance of clinicians bringing up advance care planning with their patients who may be fearful of discussing the topic with family or be waiting for some one else to initiate discussion. In our study group, more African-American patients were on treatment than were white patients. It is unclear whether this is a reflection of patient preference or is related to the communication between physician and patient (and family) about treatment options at this advanced stage of disease, including the option of no treatment, and hospice care. More African-American than white patients and their caregivers reported preferences for the use of life-sustaining measures in the near-death condition. Each of these findings may indicate possible cultural differences related to the use of medical treatment in advanced disease, although additional research is needed to thoroughly investigate what factors contribute to these differences. We found that reported discussion between patients with family caregivers about treatment preferences, which took place in 60% of the study group, did not result in agreement between patient and caregiver about life-sustaining measures desired for the patient who was near death. Other studies of surrogate decision makers have also found that surrogates and patients often do not agree about the use of life-sustaining measures for their patient.14–19 However, our focus is not so much on the accuracy of surrogate decision making but on identifying the reasons patients and their family caregivers do not agree that may be amenable to intervention. These include difficulties of patients and caregivers with the very process of decision making in advance and the lack of understanding about specific measures. Our study focused on data obtained from African-American and white patients residing in an urban setting with advanced cancer and from their caregivers. Because African-American and white patients in our study group were similar in age, education, and income, unlike the U.S. population, generalizations regarding race may be limited. Still, our findings that more African-Americans expressed a desire for the use of specific life-support measures7 and that more whites have LWs have been reported by others, as well.5,6 Interviewing patient-caregiver pairs separately enabled both patients and caregivers to speak more honestly about their treatment preferences than they might have in the presence of another family member. However, by interviewing patients and caregivers separately, we may have encouraged more definitive responses about treatment preferences than might occur in more complex deliberations about these choices. We have been able to contrast attitudes and behaviors regarding end of life within patient-caregiver pairs. However, our analyses are limited by not considering multiple caregivers for a patient and by depending on responses at one point in time, necessitating hypothetical questions regarding a future, near-death situation. Our results may not be applicable to patients and caregivers dealing with diseases that have different end-of-life trajectories, such as coronary heart failure, chronic obstructive pulmonary disease, Autoimmune Deficiency Syndrome, and Alzheimer’s dementia. Cancer as a terminal illness does represent a more familiar end-of-life disease and trajectory, and the issues germane to end-of-life decision making are more commonly associated with patients and families coping with cancer than with other diseases. We might expect, for example, that patients and families dealing with chronic terminal illness, such as chronic obstructive pulmonary disease or congestive heart failure, might be less active in obtaining advanced directive documents and less likely to discuss treatment preferences than those in our sample. Thus, generalizations to other patients with advanced disease and their family groups should be made cautiously.
The authors thank Janice Esprit and Natalie Brown for administrative and technical support. We are also grateful to the insightful comments of the anonymous reviewers on earlier versions of this article.
Supported by grant R21 NR05112-02 from the National Institute of Nursing Research.
1. American Society of Clinical Oncology. Cancer care during the last phase of life. J Clin Oncol 16:1986–1996, 1998[Abstract] 2. American Thoracic Society. Withholding and withdrawing life-sustaining therapy. Am Rev Respir Dis 144:726–731, 1991[Medline] 3. Omnibus Budget Reconciliation Act of 1990(OBRA-90). 4. Cruzan v Director. 100 S Ct. 284, 1990
5. Hanson LC, Rodgman E: The use of living wills at the end of life. A national study. Arch Intern Med 156:1018–1022, 1996 6. Murphy ST, Palmer JM, Azen S, et al: Ethnicity and advance care directives. J Law Med Ethics 24:108–117, 1996[Medline] 7. McKinley ED, Garrett JM, Evans AT, et al: Differences in end-of-life decision making among black and white ambulatory cancer patients. J Gen Intern Med 11:651–656, 1996[Medline] 8. Satz, Permultter v. 360 379 So 2nd 359, Fla, 1980 9. Bouvia, Angeles SCoL; Cal Rptr 97, 1986, p 225 10. Schloendorff, Society of New York Hospital; 105 N. E. 92, 211 N. Y. 125, 1914 11. Llobera J, Esteva M, Riva J, et al: Terminal cancer: Duration and prediction of survival time. Eur J Cancer 36:2036–2043, 2000[CrossRef][Medline] 12. McLaughlin G: SMOG grading: A new readability formula. J Read 12:639–646, 1969 13. Muhr T. ATLAS. ti (qualitative analysis software). Berlin, Scientific Software Development, Sage, 1993–2001
14. Sulmasy DP, Terry PB, Weisman CS, et al: The accuracy of substituted judgments in patients with terminal diagnoses. Ann Intern Med 128:621–629, 1998 15. Zweibel NR, Cassel CK: Treatment choices at the end of life: A comparison of decisions by older patients and their physician-selected proxies. Gerontologist 29:615–621, 1989[Abstract]
16. Ouslander JG, Tymchuk AJ, Rahbar B: Health care decisions among elderly long-term care residents and their potential proxies. Arch Intern Med 149:1367–1372, 1989 17. Uhlmann RF, Pearlman RA, Cain KC: Physicians’ and spouses’ predictions of elderly patients’ resuscitation preferences. J Gerontol 43:M115–M121, 1988[Abstract]
18. Seckler AB, Meier DE, Mulvihill M, et al: Substituted judgment: How accurate are proxy predictions? Ann Intern Med 115:92–98, 1991
19. Hare J, Pratt C, Nelson C: Agreement between patients and their self-selected surrogates on difficult medical decisions. Arch Intern Med 152:1049–1054, 1992 Submitted December 19, 2001; accepted November 19, 2002.
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Copyright © 2003 by the American Society of Clinical Oncology, Online ISSN: 1527-7755. Print ISSN: 0732-183X
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ABSTRACT
INTRODUCTION
