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Patients’ Perspectives on Physician Skill in End-of-Life Care
ethics in cardiopulmonary medicine Patients’ Perspectives on Physician Skill in End-of-Life Care* Differences Between Patients With COPD, Cancer, and AIDS J. Randall Curtis, MD, MPH, FCCP; Marjorie D. Wenrich, MPH; Jan D. Carline, PhD; Sarah E. Shannon, PhD, RN; Donna M. Ambrozy, PhD; and Paul G. Ramsey, MD
Objectives: Patients’ views of physician skill in providing end-of-life care may vary across different diseases, and understanding these differences will help physicians improve the quality of care they provide for patients at the end of life. The objective of this study was to examine the perspectives of patients with COPD, cancer, or AIDS regarding important aspects of physician skill in providing end-of-life care. Design: Qualitative study using focus groups and content analysis based on grounded theory. Setting: Outpatients from multiple medical settings in Seattle, WA. Patients: Eleven focus groups of 79 patients with three diseases: COPD (n ⴝ 24), AIDS (n ⴝ 36), or cancer (n ⴝ 19). Results: We identified, from the perspectives of patients, the important physician skills for high-quality end-of-life care. Remarkable similarities were found in the perspectives of patients with COPD, AIDS, and cancer, including the importance of emotional support, communication, and accessibility and continuity. However, each disease group identified a unique theme that was qualitatively more important to that group. For patients with COPD, the domain concerning physicians’ ability to provide patient education stood out as qualitatively and quantitatively more important. Patients with COPD desired patient education in five content areas: diagnosis and disease process, treatment, prognosis, what dying might be like, and advance care planning. For patients with AIDS, the unique theme was pain control; for patients with cancer, the unique theme was maintaining hope despite a terminal diagnosis. Conclusions: Patients with COPD, AIDS, and cancer demonstrated many similarities in their perspectives on important areas of physician skill in providing end-of-life care, but patients with each disease identified a specific area of end-of-life care that was uniquely important to them. Physicians and educators should target patients with COPD for efforts to improve patient education about their disease and about end-of-life care, especially in the areas defined above. Physicians caring for patients with advanced AIDS should discuss pain control at the end of life, and physicians caring for patients with cancer should be aware of many patients’ desires to maintain hope. Physician understanding of these differences will provide insights that allow improvement in the quality of care. (CHEST 2002; 122:356 –362) Key words: AIDS; cancer; COPD; end-of-life care; HIV; palliative care; patient education; physician competence
the quality of care for patients at the I mproving end of life has become a major goal of the medical community and the general public.1,2 However, it
*From the Division of Pulmonary and Critical Care Medicine (Dr. Curtis), Department of Medicine; School of Medicine (Ms. Wenrich and Dr. Ramsey); Department of Medical Education (Drs. Carline 356
and Ambrozy); and School of Nursing (Dr. Shannon), University of Washington, Seattle, WA. Support was provided by the Open Society Institute Project on Death in America. Manuscript received August 13, 2001; revision accepted December 3, 2001. 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 Ethics in Cardiopulmonary Medicine
remains unclear what the best ways are to improve the quality of this care. Several randomized, controlled trials3–5 of educational interventions and advance directives have not led to any significant improvements in the quality of care. A better understanding of the specific components of the quality of end-of-life care that are most important to patients and families may facilitate efforts to improve the quality of this care. Evidence suggests that patients with different diseases receive dramatically different care at the end of life despite relatively similar prognoses.6 –10 Studies9,10 suggest that end-of-life care may be significantly worse for patients with COPD compared to those with lung cancer. However, the reasons for these differences in care received are not clear. Such differences in care may be due to variations in patients’ attitudes and preferences, variations in health-care providers’ attitudes and preferences, differences in disease trajectories, or some combination of these factors. A more complete understanding of patients’ perspectives across these diseases may help improve the quality of care these patients receive. We conducted focus groups of patients with advanced COPD, cancer, or AIDS, as well as family members and health-care providers. Our goal was to elucidate the important aspects of physician skill at providing end-of-life care.11 This study offers the opportunity to compare and contrast patients’ perspectives across these three disease groups. Cancer and COPD represent the second and fourth most common causes of death in the United States, respectively12 and, since 1979, the age-adjusted mortality from COPD continues to rise.13 Although mortality from AIDS has declined with improvements in antiretroviral therapy, AIDS remains one of the most common causes of death for persons aged 15 to 44 years.14 We sought to obtain a better understanding of the unique perspective of patients about end-of-life care in each of these groups in an effort to provide insights to help provide better, more tailored care for these patients. Materials and Methods Study Design In this qualitative study, we used focus groups to determine the perspectives of terminally ill patients, family members, and health-care professionals concerning physicians’ skills in providing end-of-life care. Focus groups are a qualitative study method that capitalizes on group dynamics to obtain information that may not be available through individual interviews or quantitative methods.15,16 Results from this study have been previously published describing a conceptual framework of understanding physician skill in providing end-of-life care, and the specific components of communication about end-of-life care important www.chestjournal.org
to patients, families, and health-care workers.11,17 The University of Washington Human Subjects Committee approved all of the procedures. Data analyses presented in this article are from patients only. Focus Group Participants We conducted 11 focus groups of patients formed on the basis of patients’ major underlying diagnosis. Three groups were held with patients with COPD (n ⫽ 24), four groups with patients with AIDS (n ⫽ 36), and four groups with patients with cancer (n ⫽ 19.) Focus groups were separated by diagnosis to facilitate cross-disease comparisons, but not by other factors such as age, gender, or race or ethnicity. The goal of the purposive sampling used in this study was to identify patients with a terminal or life-limiting illness who would have first-hand knowledge about end-of-life care, and would be willing to discuss physicians’ skills at providing end-of-life care. We sampled participants until we had a sufficient number for each focus group category to provide thematic saturation (no additional themes emerged during the final phase of analyses18). In recruiting patients, we described the study focus as developing an understanding of physicians’ skills in providing care to patients with chronic and life-threatening diseases in order to avoid excluding patients who did not view themselves to be at the end of life. Patients were recruited by posting flyers in academic and community-based physicians’ offices and through support groups for patients with COPD, AIDS, or cancer. Inclusion criteria were as follows: oxygendependent COPD, C3 AIDS as defined by the Centers for Disease Control and Prevention,19 or metastatic cancer or nonoperable lung cancer. Other than the disease-specific inclusion criteria, no attempt was made to ensure patients had specific experiences with health care. Patients, families, and health-care providers came from multiple medical institutions throughout the greater Seattle area. Data Collection Focus groups were conducted by a trained qualitative researcher (D.M.A.) with a moderator’s guide that included four scripted questions. Questions for groups were as follows: (1) Think about the doctors who were the best at caring for you when you were seriously ill and thinking about your own death. What was it about the care they provided for you that was good? (2) Every doctor has areas in which they can improve. Think about these doctors you have just talked about. Even though you thought they were very good, what could they have done to improve their care even more? (3) Now think about doctors that you have seen whose care was not good. What was it about the care they provided for you that was not good? (4) If you were to get sicker than you have been, describe the ideal doctor you would want taking care of you. What skills and qualities would your ideal doctor have if you were extremely ill and might die? In addition, the focus group moderator used scripted probes, when needed, to continue discussion of a specific question or to keep the focus on end-of-life care. The moderator was responsible for encouraging all participants to voice opinions, and for preventing single individuals from monopolizing the discussion. Focus groups were 90 min in length, and participants were paid $30. Focus groups were audiotaped and transcribed verbatim. Data Analysis Transcripts were analyzed using principles of grounded theory.18,20 Domains of physicians’ skills at providing end-of-life care were identified using open coding. Specific components within CHEST / 122 / 1 / JULY, 2002
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each domain were then identified using selective coding. Explanations are provided below for these two types of coding. Investigators used previously published domains of quality of end-of-life care to draft a preliminary framework for the domains.1,21,22 This preliminary framework was drafted during two full-day meetings of investigators, with input from three additional experts in medical ethics or end-of-life care from the University of Washington (Albert R. Jonsen, PhD; Anthony L. Back, MD; and Stuart J. Farber, MD) and two experts from other institutions (Susan D. Block, MD, Harvard University; and Joan M. Teno, MD, MSc, Brown University). To revise the preliminary framework and develop the initial domain list for coding transcripts, each investigator independently reviewed the same four focus group transcripts, coding all relevant passages of participant speech into one or more of the preliminary domains. Investigators met to review codes and revise the preliminary domain list. Through this process, one of the preliminary domains, ethical and legal decision making, was eliminated and several new domains were developed, including personalization, accessibility and continuity, and patient education. After the framework was revised, investigators formed three pairs, and each pair reviewed six or seven transcripts. The investigators independently coded all relevant passages of participant speech (defined as the entire segment of speech until a change in speakers) into one or more of the revised domains, and then reviewed coding with the other investigator in the pair. Discrepancies were discussed within a pair, and if resolution was not achieved, the passage was brought to the entire group of investigators for discussion. During this process, the domain structure was continually reassessed and underwent subsequent revisions. We used a qualitative software program (Scientific Software, Scolari; Sage Publications Software; Thousand Oaks, CA) to identify all passages coded for each domain. Teams of two or three investigators then reviewed all passages within a domain to identify the major themes or “components” of the domain (selective coding). The investigators identified a minimum of three passages that captured the component and used the words of patients or families to label the component. The entire group of investigators reviewed all components and representative passages to ensure veracity of the components and wording. Because one entire domain, patient education, was identified as uniquely important for patients with COPD, one investigator (J.R.C.) reviewed the COPD group transcripts, identified all passages relevant to patient education, and developed a taxonomy for the content categories within this domain. These content categories differ from the previously published skill components11 because, rather than focusing on specific skills that could be taught to physicians, they provide physicians with the major content areas of education for patients that were most important to the patients. Trustworthiness We used two methods to assess the trustworthiness of the coding and data. First, to assess the reliability of domain coding, each investigator-pair reviewed and coded the same three transcripts using the methods described above. We compared coding across the three investigator-pairs and found agreement for 63% of all codes across all three pairs and agreement for 89% of all codes for two out of three pairs. Second, to assess the coding of patient education content categories among the patients with COPD, two investigators (J.R.C., M.D.W.) independently coded all passages identified as describing patient education into one or more of the patient education content categories. These investigators agreed on 54 of the 61 codes (89%), and complete resolution was achieved by discussing discrepancies. 358
Results Table 1 shows the number of patients in each disease category and the demographic characteristics of the focus group participants. Table 2 shows the proportion of coded passages that fell within each domain for the different types of patients, and the rankings for the frequency with which each domain was identified. As Table 2 demonstrates, there were considerable similarities across disease groups in the frequency with which comments for each domain were identified. For all three disease groups, emotional support was the single most commonly identified domain, and communication with patients and accessibility and continuity were consistently among the top three in frequency of identification. Despite these similarities in the frequency of domain codes, each disease group had a facet of care that qualitatively emerged in analyses as uniquely important for that group. For patients with COPD, this unique difference was the relative importance of one of the domains, patient education about end-oflife care. This domain was ranked fourth among domains for COPD, with 12% of the codes categorized as patient education. In contrast, patient education ranked seventh and 11th for AIDS and cancer, respectively, with ⱕ 5.5% of the codes. The following quotes demonstrate the qualitative emphasis placed on this domain by patients with COPD: In the pulmonary rehab, all of us found out for the first time that we were not going to cure or reverse emphysema. I know how I reacted, and I heard some people gasping. That was the first time we all knew that we could not reverse this disease. . . My doctor had not said anything like that to me. Patient with COPD I think a lot of doctors and a lot of people put asthma and emphysema together. It’s “You have trouble breathing”. . . and I think that sometimes doctors hold that you think emphysema is not a fatal disease, so they don’t tell you,
Table 1—Demographic Characteristics of Focus Group Participants Patient Groups Characteristics Focus groups, No. Participants in the group, No. Median age (range), yr Female gender, No. (%) Race/ethnicity, No. (%) African American White Hispanic Other/mixed ethnicity
COPD
AIDS
Cancer
3 24
4 36
4 19
70.5 (54–78) 41.5 (27–55) 58 (30–70) 16 (67) 13 (36) 12 (63) 1 (4) 23 (96) 0 0
15 (44) 17 (50) 0 2 (6)
0 18 (95) 0 1 (5)
Ethics in Cardiopulmonary Medicine
Table 2—Rankings of the No. of Passages of Focus Group Participant Speech in Each of the Domains of Physician Skills Providing End-of-Life Care, and the Percentage of Comments Within Each Group Attributed to That Domain* Patient Groups Domains Emotional support Communication with patients Accessibility and continuity Competence Personalization‡ Attention to patient values Patient education Respect and humility Pain and symptom management Support of patient decision making Team communication and coordination Inclusion and recognition of family Total counts of codes
AIDS (n ⫽ 36)
Cancer (n ⫽ 19)
COPD (n ⫽ 24)
1 (16.7)† 1 (21.8)† 1 (15.1)† 2 (12.3)† 2 (14.2)† 3 (13.6)† 3.5 (12.0)† 4 (12.2)† 2 (14.3)† 3.5 (12.0)† 3 (12.8)† 5 (9.8) 5 (9.0) 5 (9.3) 11 (3.8) 7 (7.3) 6 (5.8) 8 (5.7) 11 (3.3) 7 (5.5) 4 (11.7)† 6 (8.3) 8 (5.2) 9 (5.3) 9 (5.3) 9 (3.8) 6.5 (6.8) 8 (7.0) 10 (3.5) 10 (4.9) 11 (3.3)
11 (3.2)
6.5 (6.8)
11 (3.3)
12 (2.6)
12 (2.3)
300
344
265
*Domains are defined in a previous publication.11 Data are presented as ranking of codes within each patient group (% of codes within each patient group attributed to the domain). †One of four highest domains for each group. ‡Personalization refers to understanding and treating the patient as a unique individual.
“Hey folks, open your eyes. Emphysema is a terminal disease. You are not going to live as long as you want to live.” Patient with COPD
For patients with AIDS and patients with cancer, investigators identified specific components within domains that stood out as uniquely important because of the content and strength of the quotes. For the patients with AIDS, the component was having a physician who was not afraid to prescribe pain medications when needed. This was a component of competence, and the following two quotes demonstrate its importance: I’ve heard stories about people who have doctors who won’t prescribe pain meds for them, and I just don’t see any reason for that. [The doctors are] afraid of addiction . . . and if you have a terminal illness, there really should be no doubt that you will get your pain treated. Patient with AIDS They say, “Oh, she has a problem with cocaine, so we are not going to give her anything,” and they hand me a bunch of ibuprofen, which only stresses me out. And I never was a legal drug taker anyway. So when I go and ask for a legal narcotic, it means I’m hurting. Patient with AIDS www.chestjournal.org
For patients with cancer, investigators identified maintaining hope, one of the components of emotional support, as the component that stood out as uniquely important, as demonstrated below: One [doctor] was very grim, and when I saw him I would feel death was right around the corner. And then I’d talk to this other doctor and I don’t think he would sugar-coat things, but when you add a little bit of hope, a little bit of positiveness . . . it makes you want to fight a little more . . . that’s really, really important. Patient with cancer [Doctors] give you the negative and they scare the beejeezus out of you and then they expect you to go home and fight. I see people sitting in the [chemotherapy] room and they look sad and so depressed and so defeated. I don’t find it in the nurses, but I find it in the doctors. And it’s devastating. Patient with cancer
Since COPD was the only group for which an entire domain stood out as uniquely important, we further examined the COPD group transcripts to divide this domain into content categories of patient education. Fifty-seven of the 61 codes for patient education (93%) were placed into one of the following categories: diagnosis or disease process (18 quotes), treatment (16 quotes), prognosis (12 quotes), what dying might be like (6 quotes), and advance care planning (5 quotes). Four quotes gave a general endorsement for patient education but could not be categorized by the investigators. The most common patient education issue identified by patients with COPD was educating patients about the diagnosis or the disease process of COPD. Many COPD focus group participants spoke of the importance of understanding their disease and the lack of understanding they have, as identified by one patient: . . . I’ve been to many other [doctors] on different subjects—like I’ve got a gallbladder problem—and I go to those doctors and they say “This is what’s wrong and this is what we’ve got to do.” But you go to the respiratory doctor and they just leave me with the feeling that they don’t know what they’re talking about. They don’t know, so they can’t tell you. That’s my feeling when I leave. Patient with COPD
Educating patients about treatment was the second most common issue discussed by patients with COPD concerning patient education. For example: I get the feeling frequently—in fact, always—when I am done with an appointment and he hands me a slip for a prescription, [that] I’d like to know precisely what this is supposed to do for me. By that time, I’m getting dressed and he’s getting ready to see the next person and I forget CHEST / 122 / 1 / JULY, 2002
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to ask him. But I don’t think I should have to ask. I think he should tell me what this is going to do. Patient with COPD
COPD focus group participants identified information and education about prognosis for patients with COPD as a particular problem. The two statements from patients with COPD used above to emphasize the importance of patient education to these patients highlight the importance of understanding prognosis and the terminal nature of advanced COPD. Patients also spoke of wanting a better understanding of their short-term and longterm prognosis: Once I started going to a specialist and not just a family practitioner, that specialist was better able to tell me just what was wrong with me, what the prognosis was—shortterm and long-term. I knew I had emphysema, and I was uncomfortable about that. He made me feel a little more comfortable with it, because he seemed to understand it so much more, and when he understood it that much more, I understood it that much more. I know, basically, what my long-term chances are. Patient with COPD
In six instances, focus group participants with COPD talked about wanting to discuss death and what dying might be like with their physicians: Well, I have never had a doctor sit down and really talk to me about dying, other than to say “Don’t worry, I won’t let you die in the nursing home.” But my doctors have not held my hand and talked about dying. . . Patient with COPD
Finally, advance care planning was identified in five passages as an important topic for patient education, as shown in the example below: [My doctor] has never mentioned the form—some kind of power of attorney—it says yes, I want this, I don’t want this, and I just want to die. The doctors never approached that with me. I didn’t know about the forms until I went to the class. I don’t know if the doctor can help you with it. He can give you the form, [and] he can explain it to you. Then what you have to do, of course, is discuss it with your family. But your doctor should at least give you the option of doing that. Unless I went to the pulmonary [rehabilitation] class, I wouldn’t have known about it. Patient with COPD
Discussion We previously used focus groups to develop an understanding of the domains and specific components of physicians’ skills in providing quality endof-life care.11 In the current study, we compared and contrasted the perspectives of patients with COPD, 360
ICU (often on a ventilator), AIDS, and cancer with the goal of providing physicians with insights to improve quality of end-of-life care for these patients. There were remarkable similarities in the overall domains across the three groups.11 For example, all 12 domains were identified from the words of focus group participants for each of the three diseases. Furthermore, emotional support was the single most commonly identified domain for each disease, and communication with patients and accessibility and continuity were consistently among the top three. These findings suggest the importance of increasing emphasis on physicians’ ability to provide emotional support, communicate about end-of-life care, and maximize accessibility and continuity during end-oflife care. Despite the similarities across the three disease groups, there were some important differences that may help target efforts to improve quality of end-oflife care. Prior research6 –10 has suggested important differences in end-of-life care received by patients with different diseases, but little information is available regarding the differences in attitudes between patients with different diseases. Our study demonstrates some important differences in patients’ attitudes and expectations. Given the data suggesting patients with COPD receive lower-quality end-oflife care than patients with cancer, differences for patients with COPD are of particular interest.9,10 Our analyses suggest that for persons with end-stage COPD, patient education is an especially important domain in which physicians may fall short. Patients with COPD have a chronic, progressive, and debilitating terminal illness.23 Frequently, these patients and their caregivers must make decisions about utilizing mechanical ventilation for acute exacerbation of their disease or for long-term ventilatory support. While physicians can anticipate the development of respiratory failure, the timing of respiratory failure is very difficult to predict.24 Currently, medical care for patients with end-stage COPD and acute respiratory failure is often invasive and expensive.25 Furthermore, compared to patients with cancer, patients with COPD are more likely to die in an ICU (often on a ventilator), with a feeding tube, and with poor control of pain and other symptoms.9 Therefore, COPD represents an important disease for patient education and for discussing patient preferences regarding end-of-life care. Despite these facts, prior studies26,27 show that only a small proportion of patients with moderate-to-severe COPD enrolled in pulmonary rehabilitation programs have discussed end-of-life issues with their physicians, and the majority of these patients believe that their physicians do not understand their preferences for end-of-life medical care. Furthermore, a recent surEthics in Cardiopulmonary Medicine
vey of 96 pulmonary and critical care medicine fellows suggests that these fellows receive minimal training in palliative care and in communication about end-of-life care, and that fellows felt ill prepared in this aspect of medical care (Thomas Prendergast, MD; personal communication; February, 2002) Our results, in the context of these facts, suggest that patient education in the five content areas that we have identified would be an important step to improve the quality of end-of-life care for patients with COPD. Our study, combined with the prior research,26,27 suggests that physicians caring for patients with severe COPD are not providing adequate patient education about end-of-life care. Perhaps the most important content area for physicians caring for end-stage COPD patients is education about the progressive and irreversible nature of severe COPD. Also important are the treatment options and the mechanism of action of these treatments. Prognosis for patients with severe COPD may be a particularly difficult topic for physicians, due to the wide confidence intervals around such predictions for this disease24 and physicians’ general reluctance to prognosticate.28 However, patients in our study spoke of the importance of discussing this topic. The content area of what dying might be like may also be difficult for physicians because of the general difficulty of openly addressing dying, but this is an important area for some patients. Finally, advance care planning is an important component of this patient education that has received increasing attention in the past 10 years.29 Patients with AIDS described fears about access to pain relief when their disease becomes terminal due to professional biases around addiction. Pain is a common symptom among patients with advanced AIDS,30 and as many as two thirds of these patients describe moderate-to-severe and constant pain.31 Explicit discussion of the goals of palliative care and symptom treatment is an important component of high-quality palliative care.29 If physicians address these fears prior to the terminal phase of AIDS care, patients may have a much better palliative-care experience. Patients with cancer emphasized a unique concern with maintaining hope. Prior research on the perspectives of patients32 and physicians33 has suggested the importance of maintaining hope for patients with cancer. Our study also suggests this is a uniquely important area for these patients. A challenge that faces physicians and researchers is to develop ways to provide sensitive end-of-life care to patients with cancer that allows patients to maintain hope while simultaneously confronting the terminal nature of their disease. Potential methods for addressing this challenge that have www.chestjournal.org
been suggested by some experts include redirecting patients’ hope toward maximizing quality of life, rather than quantity of life and redirecting hope toward a positive and comfortable dying experience.34,35 Further research is needed to determine if patients find these methods helpful. This study has several limitations. All of the focus groups were conducted in one geographic region, and the racial and ethnic composition of the groups reflected the composition in the Pacific Northwest. There may be geographic or cultural differences across the United States and elsewhere important to understanding physicians’ skills providing highquality end-of-life care. Furthermore, since we included patients with only three diseases, there may be important differences among patients with diseases not represented in this study. Inclusion criteria for each disease were designed to identify patients for whom issues of end-of-life care were likely to be relevant. Although all patients had a life-limiting disease, the specific prognoses for individual patients were variable and differences in prognosis could affect patients’ views. Further research is needed to address these limitations. In addition, patients with AIDS were younger and the patients with COPD were older than those with cancer. There were more African Americans among the patients with AIDS than among those with cancer or COPD. The qualitative study design does not allow us to separate the effect of age, ethnicity, or other factors, such as history of injection drug use, on the differences between disease groups. The purpose of the study is to describe differences across these diseases, regardless of the age or other potential confounders. The influence of such potential confounders on these differences would be an important question for future, quantitative research. Finally, the number of utterances does not necessarily equal importance of a domain in focus groups, in part because of the possibility that a few participants could dominate the group. However, study methods were designed to avoid letting one or a few participants dominate discussions and the similarities across the groups support the generalizability of the findings across diseases. Patients with COPD, cancer, and AIDS demonstrated remarkable similarities in their views of the important physician skills in providing high-quality end-of-life care. However, each of the three patient groups defined by their disease also had a specific area of end-of-life care that was uniquely important to them. Physician understanding of these differences may provide insights that allow improvement of the quality in care. In particular, physicians and educators should target patients with COPD for efforts to improve patient education about their CHEST / 122 / 1 / JULY, 2002
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disease and about end-of-life care. Physicians caring for patients with advanced AIDS should clarify with their patients that the goals of palliative care include adequate pain relief, and further research is needed to find ways to help physicians caring for patients with advanced cancer maintain patients’ hope while helping them confront the terminal nature of their disease.
16 17
18 19
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reach: an introduction to qualitative methods in health and health services research. BMJ 1995; 311:42– 45 Kitzinger J. Introducing focus groups. BMJ 1995; 311: 299 –302 Wenrich MD, Curtis JR, Shannon SE, et al. Communicating with dying patients within the spectrum of medical care from terminal diagnosis to death. Arch Intern Med 2001; 161: 868 – 874 Strauss AL, Corbin J. Basics of qualitative research: techniques and procedures for developing grounded theory. Thousand Oaks, CA: Sage Publications, 1998 Centers for Disease Control and Prevention. 1993 revised classification system for HIV infection and expanded surveillance case definition for AIDS among adolescents and adults. MMWR Morb Mortal Wkly Rep 1992; 41:1–20 Glaser BG, Straus AL. Discovery of grounded theory. Chicago, IL: Adline Publishing Company, 1967 Lynn J. Measuring quality of care at the end of life: a statement of principles. J Am Geriatr Soc 1997; 45:526 –527 Caring for the dying: identification and promotion of physician competency. Philadelphia, PA: American Board of Internal Medicine, 1996 Burrows J, Earle RH. Course and prognosis of chronic obstructive lung disease: a prospective study of 200 patients. N Engl J Med 1969; 280:397– 404 American Thoracic Society. Standards for the diagnosis and care of patients with chronic obstructive pulmonary disease. Am J Respir Crit Care Med 1995; 152:S77–S120 Connors AF, Dawson NV, Thomas C, et al. Outcomes following acute exacerbation of severe chronic obstructive lung disease. Am J Respir Crit Care Med 1996:959 –967 Heffner JE, Fahy B, Hilling L, et al. Outcomes of advance directive education of pulmonary rehabilitation patients. Am J Respir Crit Care Med 1997; 155:1055–1059 Heffner JE, Fahy B, Hilling L, et al. Attitudes regarding advance directives among patients in pulmonary rehabilitation. Am J Respir Crit Care Med 1996; 154:1735–1740 Christakis NA, Lamont EB. Extent and determinants of error in doctors’ prognoses in terminally ill patients: prospective cohort study. BMJ 2000; 320:469 – 472 Lo B, Quill T, Tulsky J, et al. Discussing palliative care with patients: ACP-ASIM End-of-Life Care Consensus Panel; American College of Physicians-American Society of Internal Medicine. Ann Intern Med 1999; 130:744 –749 Kimball LR, McCormick WC. The pharmacologic management of pain and discomfort in persons with AIDS near the end of life: use of opioid analgesia in the hospice setting. J Pain Symptom Manage 1996; 11:88 –94 Frich LM, Borgbjerg FM. Pain and pain treatment in AIDS patients: a longitudinal study. J Pain Symptom Manage 2000; 19:339 –347 Rustoen T. Hope and quality of life, two central issues for cancer. Cancer Nurs 1995; 18:355–361 Delvecchio MJ, Good BJ, Schaffer C, et al. American oncology and the discourse on hope. Cult Med Psychiatry 1990; 14:59 –79 Christakis NA. The truth can comfort the dying, a physician argues. Chron High Educ 2000:A20 –A21 Ptacek JT, Eberhardt TL. Breaking bad news: a review of the literature. JAMA 1996; 276:496 –502
Ethics in Cardiopulmonary Medicine
Objectives: Patients’ views of physician skill in providing end-of-life care may vary across different diseases, and understanding these differences will help physicians improve the quality of care they provide for patients at the end of life. The objective of this study was to examine the perspectives of patients with COPD, cancer, or AIDS regarding important aspects of physician skill in providing end-of-life care. Design: Qualitative study using focus groups and content analysis based on grounded theory. Setting: Outpatients from multiple medical settings in Seattle, WA. Patients: Eleven focus groups of 79 patients with three diseases: COPD (n ⴝ 24), AIDS (n ⴝ 36), or cancer (n ⴝ 19). Results: We identified, from the perspectives of patients, the important physician skills for high-quality end-of-life care. Remarkable similarities were found in the perspectives of patients with COPD, AIDS, and cancer, including the importance of emotional support, communication, and accessibility and continuity. However, each disease group identified a unique theme that was qualitatively more important to that group. For patients with COPD, the domain concerning physicians’ ability to provide patient education stood out as qualitatively and quantitatively more important. Patients with COPD desired patient education in five content areas: diagnosis and disease process, treatment, prognosis, what dying might be like, and advance care planning. For patients with AIDS, the unique theme was pain control; for patients with cancer, the unique theme was maintaining hope despite a terminal diagnosis. Conclusions: Patients with COPD, AIDS, and cancer demonstrated many similarities in their perspectives on important areas of physician skill in providing end-of-life care, but patients with each disease identified a specific area of end-of-life care that was uniquely important to them. Physicians and educators should target patients with COPD for efforts to improve patient education about their disease and about end-of-life care, especially in the areas defined above. Physicians caring for patients with advanced AIDS should discuss pain control at the end of life, and physicians caring for patients with cancer should be aware of many patients’ desires to maintain hope. Physician understanding of these differences will provide insights that allow improvement in the quality of care. (CHEST 2002; 122:356 –362) Key words: AIDS; cancer; COPD; end-of-life care; HIV; palliative care; patient education; physician competence
the quality of care for patients at the I mproving end of life has become a major goal of the medical community and the general public.1,2 However, it
*From the Division of Pulmonary and Critical Care Medicine (Dr. Curtis), Department of Medicine; School of Medicine (Ms. Wenrich and Dr. Ramsey); Department of Medical Education (Drs. Carline 356
and Ambrozy); and School of Nursing (Dr. Shannon), University of Washington, Seattle, WA. Support was provided by the Open Society Institute Project on Death in America. Manuscript received August 13, 2001; revision accepted December 3, 2001. 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 Ethics in Cardiopulmonary Medicine
remains unclear what the best ways are to improve the quality of this care. Several randomized, controlled trials3–5 of educational interventions and advance directives have not led to any significant improvements in the quality of care. A better understanding of the specific components of the quality of end-of-life care that are most important to patients and families may facilitate efforts to improve the quality of this care. Evidence suggests that patients with different diseases receive dramatically different care at the end of life despite relatively similar prognoses.6 –10 Studies9,10 suggest that end-of-life care may be significantly worse for patients with COPD compared to those with lung cancer. However, the reasons for these differences in care received are not clear. Such differences in care may be due to variations in patients’ attitudes and preferences, variations in health-care providers’ attitudes and preferences, differences in disease trajectories, or some combination of these factors. A more complete understanding of patients’ perspectives across these diseases may help improve the quality of care these patients receive. We conducted focus groups of patients with advanced COPD, cancer, or AIDS, as well as family members and health-care providers. Our goal was to elucidate the important aspects of physician skill at providing end-of-life care.11 This study offers the opportunity to compare and contrast patients’ perspectives across these three disease groups. Cancer and COPD represent the second and fourth most common causes of death in the United States, respectively12 and, since 1979, the age-adjusted mortality from COPD continues to rise.13 Although mortality from AIDS has declined with improvements in antiretroviral therapy, AIDS remains one of the most common causes of death for persons aged 15 to 44 years.14 We sought to obtain a better understanding of the unique perspective of patients about end-of-life care in each of these groups in an effort to provide insights to help provide better, more tailored care for these patients. Materials and Methods Study Design In this qualitative study, we used focus groups to determine the perspectives of terminally ill patients, family members, and health-care professionals concerning physicians’ skills in providing end-of-life care. Focus groups are a qualitative study method that capitalizes on group dynamics to obtain information that may not be available through individual interviews or quantitative methods.15,16 Results from this study have been previously published describing a conceptual framework of understanding physician skill in providing end-of-life care, and the specific components of communication about end-of-life care important www.chestjournal.org
to patients, families, and health-care workers.11,17 The University of Washington Human Subjects Committee approved all of the procedures. Data analyses presented in this article are from patients only. Focus Group Participants We conducted 11 focus groups of patients formed on the basis of patients’ major underlying diagnosis. Three groups were held with patients with COPD (n ⫽ 24), four groups with patients with AIDS (n ⫽ 36), and four groups with patients with cancer (n ⫽ 19.) Focus groups were separated by diagnosis to facilitate cross-disease comparisons, but not by other factors such as age, gender, or race or ethnicity. The goal of the purposive sampling used in this study was to identify patients with a terminal or life-limiting illness who would have first-hand knowledge about end-of-life care, and would be willing to discuss physicians’ skills at providing end-of-life care. We sampled participants until we had a sufficient number for each focus group category to provide thematic saturation (no additional themes emerged during the final phase of analyses18). In recruiting patients, we described the study focus as developing an understanding of physicians’ skills in providing care to patients with chronic and life-threatening diseases in order to avoid excluding patients who did not view themselves to be at the end of life. Patients were recruited by posting flyers in academic and community-based physicians’ offices and through support groups for patients with COPD, AIDS, or cancer. Inclusion criteria were as follows: oxygendependent COPD, C3 AIDS as defined by the Centers for Disease Control and Prevention,19 or metastatic cancer or nonoperable lung cancer. Other than the disease-specific inclusion criteria, no attempt was made to ensure patients had specific experiences with health care. Patients, families, and health-care providers came from multiple medical institutions throughout the greater Seattle area. Data Collection Focus groups were conducted by a trained qualitative researcher (D.M.A.) with a moderator’s guide that included four scripted questions. Questions for groups were as follows: (1) Think about the doctors who were the best at caring for you when you were seriously ill and thinking about your own death. What was it about the care they provided for you that was good? (2) Every doctor has areas in which they can improve. Think about these doctors you have just talked about. Even though you thought they were very good, what could they have done to improve their care even more? (3) Now think about doctors that you have seen whose care was not good. What was it about the care they provided for you that was not good? (4) If you were to get sicker than you have been, describe the ideal doctor you would want taking care of you. What skills and qualities would your ideal doctor have if you were extremely ill and might die? In addition, the focus group moderator used scripted probes, when needed, to continue discussion of a specific question or to keep the focus on end-of-life care. The moderator was responsible for encouraging all participants to voice opinions, and for preventing single individuals from monopolizing the discussion. Focus groups were 90 min in length, and participants were paid $30. Focus groups were audiotaped and transcribed verbatim. Data Analysis Transcripts were analyzed using principles of grounded theory.18,20 Domains of physicians’ skills at providing end-of-life care were identified using open coding. Specific components within CHEST / 122 / 1 / JULY, 2002
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each domain were then identified using selective coding. Explanations are provided below for these two types of coding. Investigators used previously published domains of quality of end-of-life care to draft a preliminary framework for the domains.1,21,22 This preliminary framework was drafted during two full-day meetings of investigators, with input from three additional experts in medical ethics or end-of-life care from the University of Washington (Albert R. Jonsen, PhD; Anthony L. Back, MD; and Stuart J. Farber, MD) and two experts from other institutions (Susan D. Block, MD, Harvard University; and Joan M. Teno, MD, MSc, Brown University). To revise the preliminary framework and develop the initial domain list for coding transcripts, each investigator independently reviewed the same four focus group transcripts, coding all relevant passages of participant speech into one or more of the preliminary domains. Investigators met to review codes and revise the preliminary domain list. Through this process, one of the preliminary domains, ethical and legal decision making, was eliminated and several new domains were developed, including personalization, accessibility and continuity, and patient education. After the framework was revised, investigators formed three pairs, and each pair reviewed six or seven transcripts. The investigators independently coded all relevant passages of participant speech (defined as the entire segment of speech until a change in speakers) into one or more of the revised domains, and then reviewed coding with the other investigator in the pair. Discrepancies were discussed within a pair, and if resolution was not achieved, the passage was brought to the entire group of investigators for discussion. During this process, the domain structure was continually reassessed and underwent subsequent revisions. We used a qualitative software program (Scientific Software, Scolari; Sage Publications Software; Thousand Oaks, CA) to identify all passages coded for each domain. Teams of two or three investigators then reviewed all passages within a domain to identify the major themes or “components” of the domain (selective coding). The investigators identified a minimum of three passages that captured the component and used the words of patients or families to label the component. The entire group of investigators reviewed all components and representative passages to ensure veracity of the components and wording. Because one entire domain, patient education, was identified as uniquely important for patients with COPD, one investigator (J.R.C.) reviewed the COPD group transcripts, identified all passages relevant to patient education, and developed a taxonomy for the content categories within this domain. These content categories differ from the previously published skill components11 because, rather than focusing on specific skills that could be taught to physicians, they provide physicians with the major content areas of education for patients that were most important to the patients. Trustworthiness We used two methods to assess the trustworthiness of the coding and data. First, to assess the reliability of domain coding, each investigator-pair reviewed and coded the same three transcripts using the methods described above. We compared coding across the three investigator-pairs and found agreement for 63% of all codes across all three pairs and agreement for 89% of all codes for two out of three pairs. Second, to assess the coding of patient education content categories among the patients with COPD, two investigators (J.R.C., M.D.W.) independently coded all passages identified as describing patient education into one or more of the patient education content categories. These investigators agreed on 54 of the 61 codes (89%), and complete resolution was achieved by discussing discrepancies. 358
Results Table 1 shows the number of patients in each disease category and the demographic characteristics of the focus group participants. Table 2 shows the proportion of coded passages that fell within each domain for the different types of patients, and the rankings for the frequency with which each domain was identified. As Table 2 demonstrates, there were considerable similarities across disease groups in the frequency with which comments for each domain were identified. For all three disease groups, emotional support was the single most commonly identified domain, and communication with patients and accessibility and continuity were consistently among the top three in frequency of identification. Despite these similarities in the frequency of domain codes, each disease group had a facet of care that qualitatively emerged in analyses as uniquely important for that group. For patients with COPD, this unique difference was the relative importance of one of the domains, patient education about end-oflife care. This domain was ranked fourth among domains for COPD, with 12% of the codes categorized as patient education. In contrast, patient education ranked seventh and 11th for AIDS and cancer, respectively, with ⱕ 5.5% of the codes. The following quotes demonstrate the qualitative emphasis placed on this domain by patients with COPD: In the pulmonary rehab, all of us found out for the first time that we were not going to cure or reverse emphysema. I know how I reacted, and I heard some people gasping. That was the first time we all knew that we could not reverse this disease. . . My doctor had not said anything like that to me. Patient with COPD I think a lot of doctors and a lot of people put asthma and emphysema together. It’s “You have trouble breathing”. . . and I think that sometimes doctors hold that you think emphysema is not a fatal disease, so they don’t tell you,
Table 1—Demographic Characteristics of Focus Group Participants Patient Groups Characteristics Focus groups, No. Participants in the group, No. Median age (range), yr Female gender, No. (%) Race/ethnicity, No. (%) African American White Hispanic Other/mixed ethnicity
COPD
AIDS
Cancer
3 24
4 36
4 19
70.5 (54–78) 41.5 (27–55) 58 (30–70) 16 (67) 13 (36) 12 (63) 1 (4) 23 (96) 0 0
15 (44) 17 (50) 0 2 (6)
0 18 (95) 0 1 (5)
Ethics in Cardiopulmonary Medicine
Table 2—Rankings of the No. of Passages of Focus Group Participant Speech in Each of the Domains of Physician Skills Providing End-of-Life Care, and the Percentage of Comments Within Each Group Attributed to That Domain* Patient Groups Domains Emotional support Communication with patients Accessibility and continuity Competence Personalization‡ Attention to patient values Patient education Respect and humility Pain and symptom management Support of patient decision making Team communication and coordination Inclusion and recognition of family Total counts of codes
AIDS (n ⫽ 36)
Cancer (n ⫽ 19)
COPD (n ⫽ 24)
1 (16.7)† 1 (21.8)† 1 (15.1)† 2 (12.3)† 2 (14.2)† 3 (13.6)† 3.5 (12.0)† 4 (12.2)† 2 (14.3)† 3.5 (12.0)† 3 (12.8)† 5 (9.8) 5 (9.0) 5 (9.3) 11 (3.8) 7 (7.3) 6 (5.8) 8 (5.7) 11 (3.3) 7 (5.5) 4 (11.7)† 6 (8.3) 8 (5.2) 9 (5.3) 9 (5.3) 9 (3.8) 6.5 (6.8) 8 (7.0) 10 (3.5) 10 (4.9) 11 (3.3)
11 (3.2)
6.5 (6.8)
11 (3.3)
12 (2.6)
12 (2.3)
300
344
265
*Domains are defined in a previous publication.11 Data are presented as ranking of codes within each patient group (% of codes within each patient group attributed to the domain). †One of four highest domains for each group. ‡Personalization refers to understanding and treating the patient as a unique individual.
“Hey folks, open your eyes. Emphysema is a terminal disease. You are not going to live as long as you want to live.” Patient with COPD
For patients with AIDS and patients with cancer, investigators identified specific components within domains that stood out as uniquely important because of the content and strength of the quotes. For the patients with AIDS, the component was having a physician who was not afraid to prescribe pain medications when needed. This was a component of competence, and the following two quotes demonstrate its importance: I’ve heard stories about people who have doctors who won’t prescribe pain meds for them, and I just don’t see any reason for that. [The doctors are] afraid of addiction . . . and if you have a terminal illness, there really should be no doubt that you will get your pain treated. Patient with AIDS They say, “Oh, she has a problem with cocaine, so we are not going to give her anything,” and they hand me a bunch of ibuprofen, which only stresses me out. And I never was a legal drug taker anyway. So when I go and ask for a legal narcotic, it means I’m hurting. Patient with AIDS www.chestjournal.org
For patients with cancer, investigators identified maintaining hope, one of the components of emotional support, as the component that stood out as uniquely important, as demonstrated below: One [doctor] was very grim, and when I saw him I would feel death was right around the corner. And then I’d talk to this other doctor and I don’t think he would sugar-coat things, but when you add a little bit of hope, a little bit of positiveness . . . it makes you want to fight a little more . . . that’s really, really important. Patient with cancer [Doctors] give you the negative and they scare the beejeezus out of you and then they expect you to go home and fight. I see people sitting in the [chemotherapy] room and they look sad and so depressed and so defeated. I don’t find it in the nurses, but I find it in the doctors. And it’s devastating. Patient with cancer
Since COPD was the only group for which an entire domain stood out as uniquely important, we further examined the COPD group transcripts to divide this domain into content categories of patient education. Fifty-seven of the 61 codes for patient education (93%) were placed into one of the following categories: diagnosis or disease process (18 quotes), treatment (16 quotes), prognosis (12 quotes), what dying might be like (6 quotes), and advance care planning (5 quotes). Four quotes gave a general endorsement for patient education but could not be categorized by the investigators. The most common patient education issue identified by patients with COPD was educating patients about the diagnosis or the disease process of COPD. Many COPD focus group participants spoke of the importance of understanding their disease and the lack of understanding they have, as identified by one patient: . . . I’ve been to many other [doctors] on different subjects—like I’ve got a gallbladder problem—and I go to those doctors and they say “This is what’s wrong and this is what we’ve got to do.” But you go to the respiratory doctor and they just leave me with the feeling that they don’t know what they’re talking about. They don’t know, so they can’t tell you. That’s my feeling when I leave. Patient with COPD
Educating patients about treatment was the second most common issue discussed by patients with COPD concerning patient education. For example: I get the feeling frequently—in fact, always—when I am done with an appointment and he hands me a slip for a prescription, [that] I’d like to know precisely what this is supposed to do for me. By that time, I’m getting dressed and he’s getting ready to see the next person and I forget CHEST / 122 / 1 / JULY, 2002
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to ask him. But I don’t think I should have to ask. I think he should tell me what this is going to do. Patient with COPD
COPD focus group participants identified information and education about prognosis for patients with COPD as a particular problem. The two statements from patients with COPD used above to emphasize the importance of patient education to these patients highlight the importance of understanding prognosis and the terminal nature of advanced COPD. Patients also spoke of wanting a better understanding of their short-term and longterm prognosis: Once I started going to a specialist and not just a family practitioner, that specialist was better able to tell me just what was wrong with me, what the prognosis was—shortterm and long-term. I knew I had emphysema, and I was uncomfortable about that. He made me feel a little more comfortable with it, because he seemed to understand it so much more, and when he understood it that much more, I understood it that much more. I know, basically, what my long-term chances are. Patient with COPD
In six instances, focus group participants with COPD talked about wanting to discuss death and what dying might be like with their physicians: Well, I have never had a doctor sit down and really talk to me about dying, other than to say “Don’t worry, I won’t let you die in the nursing home.” But my doctors have not held my hand and talked about dying. . . Patient with COPD
Finally, advance care planning was identified in five passages as an important topic for patient education, as shown in the example below: [My doctor] has never mentioned the form—some kind of power of attorney—it says yes, I want this, I don’t want this, and I just want to die. The doctors never approached that with me. I didn’t know about the forms until I went to the class. I don’t know if the doctor can help you with it. He can give you the form, [and] he can explain it to you. Then what you have to do, of course, is discuss it with your family. But your doctor should at least give you the option of doing that. Unless I went to the pulmonary [rehabilitation] class, I wouldn’t have known about it. Patient with COPD
Discussion We previously used focus groups to develop an understanding of the domains and specific components of physicians’ skills in providing quality endof-life care.11 In the current study, we compared and contrasted the perspectives of patients with COPD, 360
ICU (often on a ventilator), AIDS, and cancer with the goal of providing physicians with insights to improve quality of end-of-life care for these patients. There were remarkable similarities in the overall domains across the three groups.11 For example, all 12 domains were identified from the words of focus group participants for each of the three diseases. Furthermore, emotional support was the single most commonly identified domain for each disease, and communication with patients and accessibility and continuity were consistently among the top three. These findings suggest the importance of increasing emphasis on physicians’ ability to provide emotional support, communicate about end-of-life care, and maximize accessibility and continuity during end-oflife care. Despite the similarities across the three disease groups, there were some important differences that may help target efforts to improve quality of end-oflife care. Prior research6 –10 has suggested important differences in end-of-life care received by patients with different diseases, but little information is available regarding the differences in attitudes between patients with different diseases. Our study demonstrates some important differences in patients’ attitudes and expectations. Given the data suggesting patients with COPD receive lower-quality end-oflife care than patients with cancer, differences for patients with COPD are of particular interest.9,10 Our analyses suggest that for persons with end-stage COPD, patient education is an especially important domain in which physicians may fall short. Patients with COPD have a chronic, progressive, and debilitating terminal illness.23 Frequently, these patients and their caregivers must make decisions about utilizing mechanical ventilation for acute exacerbation of their disease or for long-term ventilatory support. While physicians can anticipate the development of respiratory failure, the timing of respiratory failure is very difficult to predict.24 Currently, medical care for patients with end-stage COPD and acute respiratory failure is often invasive and expensive.25 Furthermore, compared to patients with cancer, patients with COPD are more likely to die in an ICU (often on a ventilator), with a feeding tube, and with poor control of pain and other symptoms.9 Therefore, COPD represents an important disease for patient education and for discussing patient preferences regarding end-of-life care. Despite these facts, prior studies26,27 show that only a small proportion of patients with moderate-to-severe COPD enrolled in pulmonary rehabilitation programs have discussed end-of-life issues with their physicians, and the majority of these patients believe that their physicians do not understand their preferences for end-of-life medical care. Furthermore, a recent surEthics in Cardiopulmonary Medicine
vey of 96 pulmonary and critical care medicine fellows suggests that these fellows receive minimal training in palliative care and in communication about end-of-life care, and that fellows felt ill prepared in this aspect of medical care (Thomas Prendergast, MD; personal communication; February, 2002) Our results, in the context of these facts, suggest that patient education in the five content areas that we have identified would be an important step to improve the quality of end-of-life care for patients with COPD. Our study, combined with the prior research,26,27 suggests that physicians caring for patients with severe COPD are not providing adequate patient education about end-of-life care. Perhaps the most important content area for physicians caring for end-stage COPD patients is education about the progressive and irreversible nature of severe COPD. Also important are the treatment options and the mechanism of action of these treatments. Prognosis for patients with severe COPD may be a particularly difficult topic for physicians, due to the wide confidence intervals around such predictions for this disease24 and physicians’ general reluctance to prognosticate.28 However, patients in our study spoke of the importance of discussing this topic. The content area of what dying might be like may also be difficult for physicians because of the general difficulty of openly addressing dying, but this is an important area for some patients. Finally, advance care planning is an important component of this patient education that has received increasing attention in the past 10 years.29 Patients with AIDS described fears about access to pain relief when their disease becomes terminal due to professional biases around addiction. Pain is a common symptom among patients with advanced AIDS,30 and as many as two thirds of these patients describe moderate-to-severe and constant pain.31 Explicit discussion of the goals of palliative care and symptom treatment is an important component of high-quality palliative care.29 If physicians address these fears prior to the terminal phase of AIDS care, patients may have a much better palliative-care experience. Patients with cancer emphasized a unique concern with maintaining hope. Prior research on the perspectives of patients32 and physicians33 has suggested the importance of maintaining hope for patients with cancer. Our study also suggests this is a uniquely important area for these patients. A challenge that faces physicians and researchers is to develop ways to provide sensitive end-of-life care to patients with cancer that allows patients to maintain hope while simultaneously confronting the terminal nature of their disease. Potential methods for addressing this challenge that have www.chestjournal.org
been suggested by some experts include redirecting patients’ hope toward maximizing quality of life, rather than quantity of life and redirecting hope toward a positive and comfortable dying experience.34,35 Further research is needed to determine if patients find these methods helpful. This study has several limitations. All of the focus groups were conducted in one geographic region, and the racial and ethnic composition of the groups reflected the composition in the Pacific Northwest. There may be geographic or cultural differences across the United States and elsewhere important to understanding physicians’ skills providing highquality end-of-life care. Furthermore, since we included patients with only three diseases, there may be important differences among patients with diseases not represented in this study. Inclusion criteria for each disease were designed to identify patients for whom issues of end-of-life care were likely to be relevant. Although all patients had a life-limiting disease, the specific prognoses for individual patients were variable and differences in prognosis could affect patients’ views. Further research is needed to address these limitations. In addition, patients with AIDS were younger and the patients with COPD were older than those with cancer. There were more African Americans among the patients with AIDS than among those with cancer or COPD. The qualitative study design does not allow us to separate the effect of age, ethnicity, or other factors, such as history of injection drug use, on the differences between disease groups. The purpose of the study is to describe differences across these diseases, regardless of the age or other potential confounders. The influence of such potential confounders on these differences would be an important question for future, quantitative research. Finally, the number of utterances does not necessarily equal importance of a domain in focus groups, in part because of the possibility that a few participants could dominate the group. However, study methods were designed to avoid letting one or a few participants dominate discussions and the similarities across the groups support the generalizability of the findings across diseases. Patients with COPD, cancer, and AIDS demonstrated remarkable similarities in their views of the important physician skills in providing high-quality end-of-life care. However, each of the three patient groups defined by their disease also had a specific area of end-of-life care that was uniquely important to them. Physician understanding of these differences may provide insights that allow improvement of the quality in care. In particular, physicians and educators should target patients with COPD for efforts to improve patient education about their CHEST / 122 / 1 / JULY, 2002
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disease and about end-of-life care. Physicians caring for patients with advanced AIDS should clarify with their patients that the goals of palliative care include adequate pain relief, and further research is needed to find ways to help physicians caring for patients with advanced cancer maintain patients’ hope while helping them confront the terminal nature of their disease.
16 17
18 19
References 1 Field MJ, Cassel CK. Approaching death: improving care at the end of life; Institute of Medicine Report. Washington, DC: National Academy Press, 1997 2 Council on Scientific Affairs AMA. Good care of the dying patient. JAMA 1996; 275:474 – 478 3 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 1996; 274:1591–1598 4 Schneiderman LJ, Kronick R, Kaplan RM, et al. Effects of offering advance directives on medical treatment and costs. Ann Intern Med 1992; 117:599 – 606 5 Danis M, Southerland LI, Garrett JM, et al. A prospective study of advance directives for life-sustaining care. N Engl J Med 1991; 324:882– 888 6 Wachter RM, Luce JM, Hearst N, et al. Decisions about resuscitation: inequities among patients with different diseases but similar prognoses. Ann Intern Med 1989; 111:525–532 7 Levenson JW, McCarthy EP, Lynn J, et al. The last six months of life for patients with congestive heart failure. J Am Geriatr Soc 2000; 48:S101–S109 8 Somogyi-Zalud E, Zhong Z, Lynn J, et al. Dying with acute respiratory failure or multiple organ system failure with sepsis. J Am Geriatr Soc 2000; 48:S140 –S145 9 Claessens MT, Lynn J, Zhong Z, et al. Dying with lung cancer or chronic obstructive pulmonary disease: insights from SUPPORT. J Am Geriatr Soc 2000; 48:S146 –S153 10 Gore JM, Brophy CJ, Greenstone MA. How do we care for patients with end stage chronic obstructive pulmonary disease (COPD)? A comparison of palliative care and quality of life in COPD and lung cancer Thorax 2000; 55:1000 –1006 11 Curtis JR, Wenrich MD, Carline JD, et al. Understanding physicians’ skills at providing end-of-life care: perspectives of patients, families, and health care workers. J Gen Intern Med 2001; 16:41– 49 12 National vital statistics report. Hyattsville, MD: National Center for Health Statistics, US Department of Health and Human Services, 1998; 47:Table 17 13 Murray CJ, Lopez AD. Alternative projections of mortality and disability by cause 1990 –2020: Global Burden of Disease Study. Lancet 1997; 349:1498 –1504 14 Centers for Disease Control and Prevention update: trends in AIDS incidence, deaths, and prevalence—United States, 1996. MMWR Morb Mortal Wkly Rep 1997; 46:165–173 15 Pope C, Mays N. Reaching the parts other methods cannot
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