Journal of Pain and Symptom Management
Volume 39, Issue 3 , Pages 527-534, March 2010

Provider Communication and Patient Understanding of Life-Limiting Illness and Their Relationship to Patient Communication of Treatment Preferences

  • Glenn J. Wagner, PhD

      Affiliations

    • RAND Corporation, Santa Monica, California, USA
    • Corresponding Author InformationAddress correspondence to: Glenn J. Wagner, PhD, RAND, 1776 Main Street, Santa Monica, CA 90407, USA.
  • ,
  • Deborah Riopelle, MS

      Affiliations

    • Veterans Administration Greater Los Angeles Healthcare Center, Los Angeles, California, USA
  • ,
  • Jillisa Steckart, PsyD

      Affiliations

    • Veterans Administration Greater Los Angeles Healthcare Center, Los Angeles, California, USA
  • ,
  • Karl A. Lorenz, MD

      Affiliations

    • Veterans Administration Greater Los Angeles Healthcare Center, Los Angeles, California, USA
  • ,
  • Kenneth E. Rosenfeld, MD

      Affiliations

    • Veterans Administration Greater Los Angeles Healthcare Center, Los Angeles, California, USA

Accepted 3 August 2009. published online 22 February 2010.

Article Outline

Abstract 

Medical decision making in the context of serious illness ideally involves a patient who understands his or her condition and prognosis and can effectively formulate and communicate his or her care preferences. To understand the relationships among these care processes, we analyzed baseline interview data from veterans enrolled in a randomized controlled trial of a palliative care intervention. Participants were 400 inpatient veterans admitted with a physician-estimated risk of one-year mortality more than 25%; 260 (65%) had cancer as the primary diagnosis. Patients who believed that they had a life-limiting illness (89% of sample) reported that their provider had communicated this to them more frequently than those who did not share that belief (78% vs. 22%, P<0.001). Over half (53%) of the participants reported discussing their care preferences with their providers and 66% reported such discussions with their family; 35% had a living will. In multivariate analysis, greater functional impairment was associated with patients having discussed their care preferences with providers (P<0.05), whereas patient understanding of prognosis (P<0.05), better quality of life (P<0.01), and not being African American (P<0.05) were associated with patients having discussed their care preferences with family; higher education (P<0.001), and not being African American (P<0.01) were associated with having a living will. Patients with poor understanding of prognosis are less likely to discuss care preferences with family members, suggesting the importance of provider communication with patients regarding prognosis. Because functional decline may prompt physicians to discuss prognosis with patients, patients with relatively preserved function may particularly need such communication.

Key Words: Physician-patient communication, prognosis, advance care planning, patient autonomy, medical decision making

 

Back to Article Outline

Introduction 

Patient self-determination, meaning that treatment delivered is in accord with the patient's own values and preferences,1, 2 is a primary goal of care near the end of life. Ideally, self-determination is pursued through a process of shared decision making between a patient and physician, whereby the patient gains an understanding of his or her situation and achievable outcomes under a range of treatment choices and negotiates decisions with the physician that correspond to the patient's values and preferences.3, 4, 5 Provider communication of prognosis is assumed to be important to a patient's understanding of illness and formulation of treatment preferences. Patient communication of these preferences to providers and family becomes crucial when a patient becomes incapacitated and treatment decisions need to be made by surrogates.6 Although the importance of providers communicating prognosis and assessing patient preferences is widely accepted,4, 5 few studies have empirically examined how these processes affect key outcomes, such as patient understanding of prognosis and communication of treatment preferences.

Despite the essential role that communication plays in high-quality decision making, research has demonstrated serious deficiencies, both with regard to patients' understanding of their condition and in physicians' and surrogates' knowledge of patient treatment preferences. Patients with serious illness generally understand their diagnosis,7, 8 but many patients do not understand their prognosis or likely outcomes of treatment, and they overestimate the probability of a cure or long-term survival.7, 8, 9, 10, 11 Although physicians typically inform patients about the goals of treatment, they often neglect to inform patients about life expectancy, alternatives to treatment, and the impact of treatment on quality of life.4 Lamont and Christakis5 reported that less than half of physicians reported discussing prognosis candidly with terminally ill cancer patients, and Fried et al.12 found that a minority of older patients with serious medical illness reported being informed that they could die from their illness.

Similar deficiencies also have been identified in communication of patient preferences to physicians and surrogates. Although communication of patient preferences to physicians leads to better physician understanding of these preferences13 and greater patient satisfaction with treatment being in accord with their wishes,14 patients often do not discuss their care preferences with their providers and family.6, 15, 16, 17 It is not surprising, therefore, that provider and surrogate understanding of patient preferences are only marginally better than what would be expected by chance6, 18 and that it is not uncommon for patients to receive aggressive treatments even when they would prefer a more comfort-oriented approach to care near the end of life.3, 14

We sought to understand how provider communication and patient understanding of life-limiting illness relates to patient discussion of care preferences with providers and family in a sample of seriously ill veterans enrolled in a randomized controlled trial of a palliative care intervention. We studied how often these elements of communication take place and the relationships among them to better understand how to help patients achieve self-determination in late life care via improved provider-patient communication of prognosis and care preferences.

Back to Article Outline

Methods 

Study Sample 

The present study was conducted at the Veterans Administration Greater Los Angeles Healthcare System (VAGLAHS), as part of a randomized trial of a palliative care intervention in patients with life-limiting illness. Medical residents estimated one-year risk of dying for all patients admitted to the inpatient medical service between August 2004 and December 2006, using a six-point prognostic scale developed by the authors.19 Patients were eligible for the study if residents assigned them a “high” (26%–50%), “very high” (51%–75%), or “terminal” (>75%) one-year mortality risk. Our research with this prognostic scale has demonstrated support for the use of 26% estimated mortality risk as a meaningful cutoff for identifying patients near the end of life, as this cutoff had a relatively high positive predictive value (65%) and negative predictive value (79%) of one-year mortality.19 Patients were excluded from participation if they were cognitively impaired, as defined by scoring less than seven on the Short Portable Mental Status Questionnaire,20 admitted from or expected to be discharged to a nursing home or hospice, or reported that they did not have access to a telephone. The latter two criteria were important given that the palliative care intervention was administered primarily through telephone contact. The study was approved by the Institutional Review Board at VAGLAHS.

Study Design and Procedures 

After informed consent, patients underwent an interviewer-administered baseline assessment followed by randomization to receive either the palliative care intervention or usual care as provided at VAGLAHS. Although follow-up assessments were administered, only data from the baseline assessment were included in these analyses.

The baseline assessment was administered as soon as possible after enrollment (85% were completed during the index hospitalization). Interview questions were drawn from existing conceptual models and prior studies examining end-of-life care.11, 21, 22, 23 Demographic and background information included age, ethnicity/race, education, relationship status, parental status, living situation, and medical diagnosis. Physical functioning during the month before admission was assessed using a modified version of the 11-item physical functioning subscale of the Functional Status Questionnaire.24 Global quality of life was measured using a single item and a Likert response set.25 Patient preference for current treatment to focus on extending life vs. relieving pain and discomfort was assessed using a modified item from SUPPORT.26 Respondents were asked if they had documented their care preferences in a living will and whether they had discussed them with their provider, family, and an identified surrogate health decision maker.

Selected questions from a survey of cancer patients by Quirt et al.7 were modified to assess provider communication and patient understanding of their life-limiting illness. Participants were asked, “Do you believe that you have a medical condition or illness that might shorten your life?” Participants who responded “yes” to this question were asked, “Did you come to this understanding, at least in part, because of information that a doctor or other provider gave you?” Those who responded “no” were asked, “Have your medical providers indicated that your condition or illness might shorten your life?”

Data Analysis 

Bivariate analyses used t-tests (two-tailed) and analysis of variance to compare groups with regard to continuous variables, and Chi-square tests to compare group differences with regard to categorical variables. Given the exploratory nature of the analyses, corrections for multiple comparisons were not applied. Separate multiple logistic regression analyses were conducted for each of the following dependent variables: patient discussion of care preferences with medical providers, patient discussion of preferences with family, and patient documentation of preferences in a living will. In each of these analyses, the independent variables consisted of demographics (age, education, and race), primary diagnosis (cancer vs. noncancer), resident prognostic estimate, degree of functional impairment, quality of life, patient preference for current care to focus on extending life vs. comfort, patient report of their provider informing them of the life-limiting nature of their illness, and patient understanding of the life-limiting nature of their illness.

Back to Article Outline

Results 

Sample Description 

Of 7182 admissions to general medicine wards during the enrollment period, 6819 prognostications were estimated by physicians (95%). The 6819 prognostic estimates were determined over multiple admissions of 4567 unique patients. Of these 4567 patients, 1355 (30%) had a one-year risk of mortality estimated at more than 25%, of which 559 (41%) were eligible. The most common reasons for exclusion were being admitted from or expecting to be discharged to a nursing home or hospice (n=343, 25%) and significant cognitive impairment (n=149, 11%).

Of the 559 eligible patients, 400 (72%) enrolled and completed the baseline survey, 142 (25%) refused enrollment, and 17 (3%) were unable to be contacted to approach for consent. Table 1 lists the demographic and background characteristics of the sample. Nearly two-thirds (n=260, 65%) of the patients were diagnosed with cancer. Two hundred twenty-four (56%) patients were rated by residents as having a 26%–50% one-year mortality risk, 117 (29%) with a 51%–75% chance of mortality, and 59 (15%) with a greater than 75% likelihood of dying. Nearly two-thirds of the sample (n=259; 65%) went on to die within one year of study enrollment; resident prognostication was strongly associated with one-year mortality, with 51%, 77%, and 92% having died with mortality risk ratings of 26%–50%, 51%–75%, and >75%, respectively (Chi-square=43.8; P<0.001). Among those who were prognostically eligible, enrollees and nonenrollees were statistically similar with regard to resident prognostic estimates.

Table 1. Demographic and Background Characteristics (n=400)
Mean (SD) age63 (11; range 30–90)
Male, n (%)389 (97)
Racial/ethnic background
Caucasian, (%)49
African American, (%)27
Latino(a), (%)11
Other, (%)13
Highest level of education
High school or less, (%)33
Some college or trade school, (%)50
College degree, (%)18
Have children, (%)75
Married or in committed relationship, (%)43
Live alone, (%)33
Live in home that they rent or own, (%)70
Functional status (mean item score [SD])1.9 (0.5)

SD=standard deviation.

Patient Understanding of Prognosis 

Of all enrolled patients, 70% reported being informed of their life-limiting condition by their provider. Reported communication of prognosis was associated with mortality risk category, with 48% of those reporting such communication having at least a 50% estimated one-year mortality, compared with 35% of those reporting no such communication (Chi-square=7.6; P<0.05); cancer diagnosis was not associated with prognostic communication. Eighty-nine percent of the sample believed that they had a life-limiting illness, yet 76% still rated their chances of being alive in one year as “excellent” or “good.” Patient understanding of the life-limiting nature of the illness was associated with primary diagnosis, with 67% of those who believed they had a life-limiting illness having cancer compared with 46% (Chi-square=6.7, P<0.01) of those who did not share this belief. However, whether or not the patient believed they had a life-limiting illness was not associated with prognostic risk category or one-year mortality. Of the 70% who had been told by their provider that they had a life-limiting illness, 97% believed that assessment, whereas 69% of patients who reported not having received this information believed that their illness would shorten their survival (P<0.001). The association of communication of prognosis with patient understanding remained significant in subgroup analyses of cancer and noncancer patients and among patients in each of the three resident prognostication categories.

Patient Communication of Treatment Goals and Preferences 

Two-thirds (63%) of the patients preferred that their current treatment focus on comfort, 28% preferred a focus on extending life, and 9% either did not know or refused to state their preference. This patient preference was not associated with primary diagnosis or prognostic risk category. Among those who preferred a focus on extending life, 77% said that they could imagine their illness worsening to the extent that they would want treatment to focus on relieving discomfort even if it meant not living as long. Just over half of the patients (53%) reported having discussed their treatment preferences with their medical providers; 66% had discussed their preferences with a family member or someone close to them. Three of every four patients (78%, n=310) had chosen a surrogate to make medical decisions for them if they became incapacitated; of these patients, 74% had discussed their care preferences with the surrogate, 84% had informed their medical provider as to who the surrogate was, and 50% reported having completed a Durable Power of Attorney for Health Care document.

In bivariate comparisons, patients who were informed by their medical providers of the life-limiting nature of their illness were more likely to have discussed their care preferences with their family (71% vs. 55%, P<0.01), and there was a trend for most of these patients to have these discussions with their providers (56% vs. 46%, P<0.10). Similarly, patients who understood the life-limiting nature of their illness were more likely to have discussed their care preferences with their family (70% vs. 44%, P<0.001) and marginally more likely of having discussed these preferences with their providers (55% vs. 42%, P<0.10). Patients who discussed their care preferences with their medical providers had greater functional impairment compared with those who did not discuss their preferences (mean impairment score=1.9 vs. 1.8; P<0.05). Patients who had discussed their preferences with their family reported better quality of life (mean score=3.6 vs. 3.3, P<0.05). Age, race, education, primary diagnosis, resident prognostication, and preference for goals of treatment were not associated with discussions of patient care preferences with providers or family.

In multivariate analysis of patient discussion of care preferences with providers, functional impairment (P<0.05) was the only significant association, with more impaired patients being more likely to report these discussions (Table 2). In the model predicting patient discussion of preferences with family, greater patient understanding of the life-limiting nature of their illness (P<0.05) and higher quality of life (P<0.01) were associated with a greater likelihood of patients having these discussions, whereas African American race was associated with a lower likelihood of these discussions (P<0.05) (Table 2).

Table 2. Multiple Logistic Regressions of Predictors of Patient Discussion and Documentation of Care Preferences
Patient Discussed Preference with ProviderPatient Discussed Preference with FamilyPatient Has Living Will
OR (CI); POR (CI); POR (CI); P
Age1.01 (0.99, 1.03); 0.401.01 (0.99, 1.04); 0.291.02 (0.99, 1.04); 0.24
College degree0.72 (0.39, 1.33); 0.290.92 (0.48, 1.76); 0.800.30 (0.16, 0.57); 0.000
Caucasian1.09 (0.62, 1.91); 0.761.61 (0.86, 3.00); 0.141.26 (0.71, 2.27); 0.43
African American1.55 (0.83, 2.92); 0.172.16 (1.08, 4.32); 0.032.70 (1.31, 5.56); 0.01
Cancer diagnosis0.91 (0.55, 1.52); 0.730.84 (0.49, 1.43); 0.521.03 (0.58, 1.82); 0.92
Prognostication0.96 (0.69, 1.32); 0.780.88 (0.62, 1.25); 0.470.97 (0.68, 1.39); 0.88
Provider told pt illness was life limiting0.91 (0.52, 1.59); 0.730.69 (0.39, 1.23); 0.211.52 (0.82, 2.81); 0.18
Pt understood illness was life limiting0.53 (0.24, 1.18); 0.120.43 (0.19, 0.95); 0.040.57 (0.23, 1.45); 0.24
Quality of life0.83 (0.67, 1.02); 0.080.74 (0.59, 0.92); 0.011.00 (0.79, 1.26); 0.98
Pt care preference0.67 (0.41, 1.10); 0.110.98 (0.58, 1.64); 0.930.73 (0.42, 1.26); 0.26
Functional impairment0.60 (0.37, 0.99); 0.050.69 (0.41, 1.18); 0.180.87 (0.50, 1.51); 0.62

OR=odds ratio; CI=confidence interval; pt=patient.

Patient Documentation of Care Preferences 

One-third (35%) of the patients reported having a living will. Patients who had a living will were more likely to have a college degree (28% vs. 12%, P<0.001) and less likely to be African American (18% vs. 32%, P<0.01). No association was found between documentation of care preferences in a living will and provider communication or patient understanding of the life-limiting nature of the patient's illness, age, primary diagnosis, functional impairment, resident prognostication, quality of life, and preference for goals of treatment. In multivariate analysis, having a college degree (P<0.001) and African American race(P<0.01) were the only factors independently associated with living will documentation (Table 2).

Back to Article Outline

Discussion 

Patient understanding of prognosis, communication of care preferences with providers and family, and provider and family knowledge of the patient's preferences are all critical elements to patients receiving care near the end of life that is concordant with their wishes.13, 14 Data from this study of veterans with advanced medical illness and high risk of dying indicate that communication of prognosis and care preferences between providers and patients is often lacking.

When providers communicate to patients the life-limiting nature of their illness, our findings show that patients are more likely to understand this aspect of their illness and to discuss their care preferences with family members. Over two-thirds of the study patients reported being informed by their providers that their illness was life limiting. Nearly all of these patients who reported a discussion of the life-limiting nature of their illness endorsed this understanding, whereas nearly one in three patients who reported no such communication with their provider denied such an understanding. The frequency of prognostic communication failure reported in this study is consistent with other studies indicating that providers are often not candid in communicating this information.5

High-quality decision making near the end of life is best served by communication of treatment wishes to those who must act on them, typically the physician and/or family members. Half of the patients had discussed their care preferences with their providers and two-thirds had such discussions with their family. Furthermore, 21% of patients had discussed their preferences with their family but not their providers. These data suggest opportunities for providers to engage willing patients in such discussions.

Three of four participants had chosen a surrogate decision maker, and patients' understanding of the life-limiting nature of their illness was an independent predictor of whether patients had discussed their care preferences with family. At the same time, nearly one-third of surrogates had not been informed by patients of their care preferences. There are varying roles that patients want their own wishes to play in the event of future decisional incapacity. Some patients may trust the decision making of their surrogate and do not feel the need to discuss specific preferences with him or her. On the other hand, surrogates may wish to learn the patient's care preferences, as such knowledge may relieve some of the decisional burden associated with the responsibility of being a surrogate.12

Functional impairment was the sole predictor of whether patients had discussed their care preferences with their medical providers, whereas patient understanding of prognosis, not functional status, was associated with patient discussion of preferences with family. These findings may be explained by understanding the impetus for such discussions. Previous studies suggest that patients expect their physicians to initiate discussions about patients' life-sustaining treatment preferences.27, 28 It is possible that physicians are more likely to initiate such discussions in the presence of observable evidence, such as physical frailty or functional decline, that life-sustaining treatment decisions might be called for in the near term. In contrast, discussions with family may more likely be initiated by the patient, provided that the patient has adequate understanding of prognosis to do so. If this is the case, physicians may indirectly enhance patient-family communication through better prognostic disclosure.

Our analysis did not find any association between provider communication or patient understanding of life-limiting illness and living will documentation. This finding is not surprising, given that living will completion at VAGLAHS typically occurs as an administrative procedure after hospital admission, rather than as a result of in-depth patient-provider communication. Given that advance directives' ethical grounding rests on the assumption that they represent an authentic expression of an informed patient's wishes, our findings suggest that self-determination may be served better if advance directive completion is the final step in a process that includes discussions about prognosis and communication of patient goals and preferences. Data collected during the current clinical trial should enable us to more fully examine the relationships between these care processes.

Our findings are consistent with other studies that have identified cross-cultural differences related to communication about life-limiting illness. African American veterans were less likely to report having been informed by their provider of the life-limiting nature of their illness, less likely to understand that they had a life-limiting illness, and less likely to communicate their care preferences with family or to report written documentation of these preferences. These findings expand on those reported in other studies, in which African Americans were more likely to report absent or problematic communication with providers,29, 30, 31, 32 and less likely to engage in processes associated with advance care planning, such as preparing a living will or advance directives,16, 33 even after controlling for clinical and other demographic factors.34 The explanation for these findings is the subject of considerable debate, with research suggesting cross-cultural differences in spiritual coping, belief in divine intervention, and distrust of the health care system.35, 36, 37 Our analysis extends the research on barriers to self-determination among African Americans and suggests that greater efforts to understand cross-cultural differences and to improve cultural sensitivity with regard to end-of-life discussions are still needed.

The study has several important limitations, including the reliance on patient self-report about provider communication of prognosis. Patient perception and memory of provider communication may not always be accurate because some patients may not recall such communication even when it has occurred.38 Nonetheless, patient perception of this communication is arguably what is most relevant for determining patient understanding of prognosis and its effects on the formulation and communication of treatment preferences. Other limitations include the inability to make causal inferences given the cross-sectional nature of the analysis and the lack of measures of variables (e.g., the quality and style of communication) that might be important factors in the relationships that we examined. In addition, our analysis was unable to assess patients' own preferences for receiving prognostic information from their physician or for communicating preferences with physician or family members. Given that some patients prefer to avoid such discussions and that cultural differences may affect how this information is communicated,39 individualized communication strategies for providing patients with prognostic information may be most effective.

In conclusion, our data call for an iterative communication process involving prognostic disclosure, clarification of patient understanding, and solicitation of values and preferences as the best way to deliver patient-centered late-life care. Our findings underscore the need to promote effective communication and mutual understanding among patients, families, and providers regarding the patient's illness and prognosis as part of improving patient-centered late-life care.

Back to Article Outline

References 

  1. The Patient Self-determination Act of 1990, SS4206, 4751 of the Omnibus Reconciliation Act of 1990, Pub L No. 101–508.
  2. President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. Deciding to forgo life-sustaining treatment: A report on the ethical, medical and legal issues in treatment decisions. Washington, DC: US Government Printing Office; 1983;
  3. White DB, Braddock CH, Bereknyei S, Curtis JR. Toward shared decision making at the end of life in intensive care units. Arch Intern Med. 2007;167:461–467
  4. Gattellari M, Voigt KJ, Butow PN, Tattersall MH. When the treatment goal is not cure: are cancer patients equipped to make informed decisions?. J Clin Oncol. 2002;20:503–513
  5. Lamont EB, Christakis NA. Prognostic disclosure to patients with cancer near the end of life. Ann Intern Med. 2001;134:1096–1105
  6. Ditto PH, Danks JH, Smucker WD, et al. Advance directives as acts of communication: a randomized controlled trial. Arch Intern Med. 2001;161:421–430
  7. Quirt CF, Mackillop WJ, Ginsburg AD, et al. Do doctors know when their patients don't? A survey of doctor-patient communication in lung cancer. Lung Cancer. 1997;18:1–20
  8. Barnett MM. Does it hurt to know the worst? Psychological morbidity, information preferences and understanding of prognosis in patients with advanced cancer. Psychooncology. 2006;15:44–55
  9. Weeks JC, Cook EF, O'Day SJ, et al. Relationship between cancer patients' predictions of prognosis and their treatment preferences. JAMA. 1998;279:1709–1714
  10. Craft PS, Burns CM, Smith WT, Broom DH. Knowledge of treatment intent among patients with advanced cancer: a longitudinal study. Eur J Cancer Care. 2005;14:417–425
  11. Mackillop WJ, Stewart WE, Ginsburg AD, Stewart SS. Cancer patients' perceptions of their disease and its treatment. Br J Cancer. 1988;58:355–358
  12. Fried TR, Bradley EH, O'Leary J. Changes in prognostic awareness among seriously ill older persons and their caregivers. J Palliat Med. 2006;9:61–69
  13. Wenger NS, Phillips RS, Teno JM, et al. Physician understanding of patient resuscitation preferences: insights and clinical implications. J Am Geriatr Soc. 2000;48:S44–S51
  14. Teno JM, Fisher E, Hamel MB, et al. Decision-making and outcomes of prolonged ICU stays in seriously ill patients. J Am Geriatr Soc. 2000;48:S70–S74
  15. Phillips RS, Wenger NS, Teno J, et al. Choices of seriously ill patients about cardiopulmonary resuscitation: correlates and outcomes. SUPPORT Investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments. Am J Med. 1996;100:128–137
  16. Smith AK, McCarthy EP, Paulk E, et al. Racial and ethnic differences in advance care planning among patients with cancer: impact of terminal illness acknowledgement, religiousness, and treatment preferences. J Clin Oncol. 2008;26:4131–4137
  17. Teno JM, Licks S, Lynn J, et al. Do advance directives provide instructions that direct care? SUPPORT Investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment. J Am Geriatr Soc. 1997;45:508–512
  18. Covinsky KE, Fuller JD, Yaffe K, et al. Communication and decision-making in seriously ill patients: findings of the SUPPORT project. The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments. J Am Geriatr Soc. 2000;48:S187–S193
  19. Steckart MJ, Sverdlik A, Riopelle D, Wagner GJ, Rosenfeld K. Case finding in palliative care: development and evaluation of a resident prognostication tool. Washington, DC: VA - HSR&D National Meeting; February 13, 2006;
  20. Pfeiffer E. A short portable mental status questionnaire for the assessment of organic brain deficit in elderly patients. J Am Geriatr Soc. 1974;23:433–441
  21. The SUPPORT Principal Investigators . A controlled trial to improve care for seriously ill hospitalized patients. The study to understand prognoses and preferences for outcomes and risks of treatments (SUPPORT). JAMA. 1995;274:1591–1598
  22. Wenger NS, Shekelle PG the ACOVE Investigators. Assessing Care of vulnerable elders: ACOVE project overview. Ann Intern Med. 2001;135:642–646
  23. Teno JM, Claridge B, Casey V, Edgman-Levitan S, Fowler J. Validation of toolkit after-death bereaved family member interview. J Pain Symptom Manage. 2001;22:752–758
  24. Jette AM, Davies AR, Cleary PD, et al. The Functional Status Questionnaire: reliability and validity when used in primary care. J Gen Intern Med. 1986;1:143–149
  25. Steinhauser KE, Clipp EC, Bosworth HB, et al. Measuring quality of life at the end of life: validation of the QUAL-E. Palliat Support Care. 2004;2:3–14
  26. Teno J, Lynn J, Wenger N, et al. Advance directives for seriously-ill hospitalized patients: effectiveness with the Patient Self-Determination Act and the SUPPORT intervention. J Am Geriatr Soc. 1997;45:500–507
  27. Emanuel LL, Barry W, Stoeckle JD. Advanced directives for medical care—a case for greater use. N Engl J Med. 1991;324:889–895
  28. Kristjanson L. Establishing goals of care: communication traps and treatment lane changes. In:  Ferrell BR,  Coyle N editor. Textbook of palliative nursing. New York: Oxford University Press; 2001;p. 331–338
  29. Welch LC, Teno JM, Mor V. End-of-life care in black and white: race matters for medical care of dying patients and their families. J Am Geriatr Soc. 2005;53:1145–1153
  30. Wenger NS, Kanouse DE, Collins RL, et al. End-of-life discussions and preferences among persons living with HIV. JAMA. 2001;285:2880–2887
  31. Kagawa-Singer M, Blackhall LJ. Negotiating cross-cultural issues at the end of life: “You got to go where he lives”. JAMA. 2001;286:2993–3001
  32. Crawley LM. Racial, cultural, and ethnic factors influencing end-of-life care. J Palliat Med. 2005;8(Suppl 1):S58–S69
  33. Phipps E, True G, Harris D, et al. Approaching the end of life: attitudes, preferences, and behaviors of African-Americans and white patients and their family caregivers. J Clin Oncol. 2003;21:549–554
  34. Degenholtz HB, Arnold RA, Meisel A, Lave JR. Persistence of racial disparities in advance care plan documents among nursing home residents. J Am Geriatr Soc. 2002;50:378–381
  35. Perkins HS, Geppert CM, Gonzales A, Cortez JD, Hazuda HP. Cross-cultural similarities and differences in attitudes about advance care planning. J Gen Intern Med. 2002;17:48–57
  36. True G, Phipps EJ, Braitman LE, et al. Treatment preferences and advance care planning at end of life: the role of ethnicity and spiritual coping in cancer patients. Ann Behav Med. 2005;30:174–179
  37. Waters CM. Understanding and supporting African Americans' perspectives of end-of-life care planning and decision making. Qual Health Res. 2001;11:385–398
  38. Gabrijel S, Grize L, Helfenstein E, et al. Receiving the diagnosis of lung cancer: patient recall of information and satisfaction with physician communication. J Clin Oncol. 2008;26:297–302
  39. Gabbay BB, Matsumura S, Etzioni S, et al. Negotiating end-of-life decision making: a comparison of Japanese and U.S. residents' approaches. Acad Med. 2005;80:617–621

 Support for this study was provided by the VA Center for the Study of Healthcare Provider Behavior, and funding was provided by VA HSR&D grant IIR 02-294 (Principal Investigator, Dr. Rosenfeld).

PII: S0885-3924(10)00073-4

doi:10.1016/j.jpainsymman.2009.07.012

Journal of Pain and Symptom Management
Volume 39, Issue 3 , Pages 527-534, March 2010