| | Physicians' Interactions with Health Care Teams and Systems in the Care of Dying Patients: Perspectives of Dying Patients, Family Members, and Health Care ProfessionalsAccepted 25 February 2002. Abstract This study investigated the specific physician skills required to interact with health care systems in order to provide high quality care at the end of life. We used focus groups of patients with terminal diseases, family members, nurses and social workers from hospice or acute care settings, and physicians. We performed content analysis based on grounded theory. Groups were interviewed. Two domains were found related to physician interactions with health care systems: 1) access and continuity, and 2) team communication and coordination. Components of these domains most frequently mentioned included taking as much time as needed with the patient, accessibility, and respect shown in working with health team members. This study highlights the need for both physicians and health care systems to improve accessibility for patients and families and increase coordination of efforts between health care team members when working with dying patients and their families.
Introduction  Improving the quality of care at the end of life has received considerable attention in the medical literature over the last five years.1, 2, 3, 4, 5, 6 Studies have shown that patients are dying with inadequate pain control,7, 8 in settings in which they prefer not to die,9 and without adequate communication with their health care providers about treatment preferences.10 Efforts to improve this care have been largely disappointing. Randomized controlled trials have shown no effect of advance directives on end-of-life care.11 The SUPPORT study,7 a multi-faceted intervention that provided patients and physicians with prognostic information and facilitated patient–physician communication about end-of-life care had no effect on quality of care. The reasons for the failures of these interventions are likely complex and multi-dimensional. Analyses by SUPPORT investigators and others suggest that better education, prognostication, and communication may have only a limited effect. Instead, success in improving end-of-life care may require changes to the systems and structures in which this care is provided.12 Changing the health care system and the structure in which professionals provide care is an important component of improving quality of care13 and elements of the organization or structure of health care have been identified as barriers to improvements to end-of-life care.1 However, determining the directions in which systemic and structural changes need to be made is not a simple task. Changes should incorporate the views of patients receiving the care and their families as well as the perspectives of nurses, physicians, and other health care workers who provide care. Furthermore, understanding the interaction between systems and individual physicians' skills may permit physicians to play a more active role in improving the systems in which they work. We conducted a qualitative study to determine the components of physician skills at providing end-of-life care that are important to patients with chronic and terminal illnesses, families who lost a loved one to a chronic illness, and health care providers.14 Prior analyses identified 12 domains of physician skill at providing end-of-life care.14, 15 In this report, we focus on the two domains that reflect interactions between the health care system and physicians: 1) accessibility and continuity of care and 2) team communication and coordination. The purpose of this analysis is to describe the systems or structural components of this care that facilitate or impede high quality end-of-life care provided by physicians. Once identified, these components could be targeted for interventions to overcome these impediments and improve systems of care, thereby improving the quality of care received by patients at the end of life. Methods Study Design and Recruitment Focus groups16, 17 were used to examine physician skill at end-of-life care. We employed purposive sampling to identify individuals with first-hand experience of end-of-life care provided by physicians. Focus groups were held with patients, family members, health care workers, and physicians. Patient groups consisted of patients with AIDS, cancer, or COPD. Family members included any individual who had closely observed and participated in the care of a dying patient, whether directly related or not. Health care workers were nurses or social workers who worked with dying patients, either in the hospital or hospice setting. Physicians were experts at end-of-life care. The study methods and recruitment have been described previously14 and are summarized below. The study was reviewed and approved by the Human Subjects Division of the University of Washington. Patients were recruited from clinics and community and academic physicians' offices throughout Seattle and from regional AIDS, cancer, and COPD support groups. Inclusion criteria for patients included C3 AIDS as defined by the Centers for Disease Control and Prevention, oxygen-dependent COPD, or metastatic cancer or non-operable lung cancer. Family members were recruited through grief support groups, flyers in clinics, and key informants in hospice programs. Inclusion criteria for family members included having participated in or observed the medical care of a loved one who died 2–12 months previously. Health care workers were recruited through key informants in hospitals and hospice programs. Inclusion criteria were working closely with dying patients and physicians in a health care setting. To recruit physicians, nurses who participated in focus groups were asked to name physicians they identified as outstanding at end-of-life care. Inclusion criteria for physicians included practicing a specialty in which end-of-life care for chronic conditions is commonly provided. Specialties of physicians included primary care, infectious diseases, gerontology, pulmonary and critical care medicine, oncology, and neurology. Focus Groups Investigators developed a moderator guide that used open-ended questioning. Participants were asked to think about physicians who were especially good at end-of-life care and describe what was helpful about their care and what could have improved. They were then asked to think about physicians whose care was poor and describe what was poor about their care. Participants were also asked to describe the most important qualities that doctors should possess to deliver excellent end-of-life care. A trained focus group facilitator conducted the focus groups. All groups were 90 minutes in length, except physician groups were 60 minutes. The facilitator used scripted probes to continue discussion, refocus participants on issues relevant to end-of-life care, and encourage all participants to share their views while discouraging anyone from monopolizing the discussion. Participants were paid $30, and all groups were audiotaped and transcribed verbatim. Twenty focus groups were held with a total of 137 participants between October 1997 and July 1998. Three groups were held with patients with COPD, four groups with patients with AIDS, and four groups with patients with cancer. Three focus groups were held with family members, four focus groups with health care workers, and two groups with physicians from both academic and community settings. Transcript Analyses A list of domains relevant to care of dying patients by physicians was developed through an iterative process based on grounded theory.18, 19 Grounded theory is a general methodology for developing theory that is grounded in qualitative data systematically gathered and analyzed. The intent of grounded theory is to identify the core social psychological or social structural processes within a given event. Analysis is “grounded” in context-dependent observations (i.e., focus group statements) and the researcher repeatedly compares research interpretations against the observations. The initial list of domains was developed through a review of literature and extensive meetings among investigators and expert consultants. All investigators then independently reviewed four focus group transcripts and coded all relevant passages into one or more of the initial domains and, based on this process, we revised the preliminary domain list. Using the revised domain list, investigator-pairs coded all transcripts. Each pair reviewed six or seven transcripts, independently coding all relevant passages, and then discussed and resolved coding disagreements. When agreement on a passage could not be achieved within a pair, the entire investigative group reviewed the passage. Interrater reliability was assessed by having all investigator-pairs code the same three transcripts and comparing coding across the three pairs. Agreement was found for 63% of codes across all three pairs of coders and 89% of codes for two of three pairs. After domains were developed, investigators worked in small groups to review each individual domain in order to identify components within each domain and representative passages for these components. The entire group developed descriptions of the components using wording from patients' quotes. The current study focuses on two domains: 1) accessibility and continuity, and 2) team communication and coordination. One investigator (JDC) and a research assistant independently reviewed the transcripts and coded all passages falling within these two domains into the components previously identified. Interrater agreement was found for 85% of the coding. Any discrepancies between the codes were identified and resolved so that the results represent full agreement between the coders. Analyses were performed to determine the frequency with which each component of the two domains occurred in each focus group type. The primary author initially chose potential representative quotes for inclusion in the paper from all identified passages. These choices were included in drafts of the paper circulated to all authors along with copies of all coded passages. Authors made several suggestions for passages that were felt to be the clearest representations of the component. Final choices were made by consensus of authors. Results Demographic characteristics of focus group participants are shown in Table 1. Seven components were identified within the domain of accessibility and continuity. Six components were identified within the domain of team communication and coordination. Each of these domains and their components is discussed below. Accessibility and Continuity This domain includes components representing elements of health care that may be dependent on structural characteristics (e.g., ensures that s/he is accessible to the patient and family in a timely manner) and elements over which the physician may have some personal control (e.g., minimizes interruptions and focuses on the patient during visits). The seven components, in order of frequency of mention by focus group participants, are shown in Table 2. Each component is discussed separately below. Takes as much time as needed with the patient Taking as much time as needed was the most frequently mentioned quality of physician/patient interaction for this domain among almost all of the focus groups. A family member said, “The ideal doctor would be able to spend a little more time with the patient. It takes more than 10 minutes to talk about end of life.” Some patients described the importance of physicians taking time to explain carefully the details of their illnesses and proposed treatment plans. A patient with cancer expressed this as: “I think that it's really important that … you don't feel rushed and that you can feel like you can go in and ask a lot of questions.” A patient with COPD described how structural issues might limit a physician's time but how a physician overcame that impediment after the physician moved his practice to a new clinic setting:
After he got into a clinic, he didn't have time to explain anything to me. I could see him for about four minutes and that was my slot. I thought, “I've been shortchanged.” So I made an appointment. When he asked me what the problem was and I said “you.” I said I come in here, and I don't know what's wrong with me—I wouldn't be here if I knew. And you know what's wrong with me but you don't bother to tell me in words that I can understand. You gave me a bunch of things and a prescription and then you go to the next guy. Haven't you got too many people on your schedule? He looked at me and he said, “You may be right.” He thanked me a thousand times. Every time I went in there, he was tickled to death to see me. And he had time for me, and he had time for the guy who was there before me. Ensures that s/he is accessible to the patient and family in a timely manner This was the second most frequently mentioned component by patients with AIDS or COPD and by physicians and the most frequently mentioned concern of family members. Family members and patients appreciated when physicians provided them phone numbers, answered calls, or provided alternative systems by which questions could be answered. A patient with COPD said: “My doctor … took a blank piece of paper, and wrote in big letters his name and his telephone, and he says, ‘Call me anytime.’ I really liked that.” While the physician may assume primary responsibility, patients and families commented that other members of the health care team could be accessible. A family member said:
Our doctor had a nurse whose job was answering phone calls. She was really an intermediary, but she was wonderful. Always got back to us by 5:00 the same day. That made a huge difference in how we felt about it. Makes the patient feel confident that s/he will not be abandoned prior to death The third most frequently mentioned topic was concern about the physician abandoning the patient prior to death. A patient with AIDS stated: “I have a vision of my doctor being there for me when I'm getting ready to die. And if he's not, I'm gonna curse his ass out, next time I see him, because I didn't come all this way with him to be left.” Patients expressed a need for their physician to remain part of their care until death. A patient with cancer said: “I had a friend die a year ago. His doctor was accessible, he was there. He didn't become a friend of this person, but he certainly became an intimate part of this person's death. He was on call, he did not divorce himself from the situation.” Some instances of abandonment appeared to result from the progressive illness. A nurse said: “There's that sense of abandonment that comes when there are fewer interventions being offered, fewer reasons to go to see the doctor … Those little things like phone calls become the line they still have to somebody, a physician who cares.” Other instances of abandonment resulted from apparent personal discomfort on the part of physicians. Family members and health care workers commented on instances when the physician appeared to avoid contact with the patient and family because of the patient's imminent death. A family member said: “When she started getting really sick, I could see some distress on the doctor's face. He was out of there as fast as possible, because it was difficult for him to deal with, emotionally. It just would have been nice to have a little more presence there.” Other instances of abandonment appeared to result from factors that may be partly personal and partly structural, such as physicians' unwillingness to assume a role in palliative care. A health care worker expressed her concerns about the patient's abandonment:
I see that abandonment piece often when the oncologist decides that this person is a palliative care patient. And then it's like, “Okay, it's your [non-physician personnel] turn to take over.” Very rarely do you see them [physicians] there. Avoids keeping the patient waiting without explanations A common criticism of physicians was keeping the patient waiting for an appointment without providing an explanation or offering an apology. A patient with COPD said: “Being kept waiting for an hour and fifteen minutes, and then nobody will tell you ‘We’re running late', or ‘Do you want to go have a cup of coffee or go outside?’ They just keep you.” Waiting for the doctor occurred in multiple settings. A family member described the lack of physician contact in the hospital:
We could see that he [the patient] would be in pain or having discomfort or his catheter was irritating him or his IV was irritating him—you know, just different things that um, I would constantly have to go and tell a nurse. And she would say, Well, the doctor should be here pretty soon, and you know, the doctor wouldn't be there, wouldn't be there, and I would say, Well, could you page the doctor? I thought that was ridiculous and I was really disgusted with the whole thing, and his doctor sometimes wouldn't come in all day. Health-care workers also expressed concern about this problem. A health-care worked said: “He [a physician] doesn't always visit his patients in the hospital the way we think he should. He'll let them lay for 24 hours. If they're admitted in the evening, he won't come in until it's convenient for him.” Continues to be involved with the patient after referral to hospice Patients, family members, and health care workers described the structural problem of being cut off from the primary physician after the patient is transferred to a nursing home or hospice. A family member stated “I think it is very cruel when a doctor is taking care of someone for eight or ten years and they have to go to a nursing home, and [you] never see them again.” For some, the threat of being cut off from one's physician was perceived as a barrier to needed care. A family member said:
When we first called hospice, three different people told us we had to give up our physician. And so we didn't set up for hospice initially, because it had taken us so many years, so many tries to get a physician we liked. Minimizes interruptions and focuses on the patient during visits Patients expressed a strong desire to have the physician focus on the patient and his or her needs without interruption. A patient with AIDS stated “I think that he needs, when he's with you, whether it's a pretense or a reality, to let you know that he's with you, that you are his prime concern at that moment.” Associated problems included taking calls or questions from others, not being prepared for the appointment, and leaving the room quickly. Describing frustration at a physician's lack of concentration, a patient with cancer said: “He'd take calls during the visit. You feel like it is your time and you should be concentrating on that.” A physician summed up the importance of this issue: “… I think you need to give the patient and the family your undivided attention. I often see people trying to rush out of the room, and I think that gives a very negative feeling that you don't have time enough to spend to talk about the death of someone they love.” A patient with AIDS describes the opposite of this behavior. “My present physician is a very busy man and he is under constant pressure. And never did he convey to me that I am a hurt-some interruption in his busy schedule.” Has contact with the family after the patient's death The desire for continuity of contact with a physician sometimes extended beyond death itself. A family member said:
I'd like to see a follow-up call from a physician. It would mean a lot to me to get a call from a physician: asking if I had any more questions, offering to give me that information without charging for an office call, but just as a normal follow-up. Team Communication and Coordination This domain includes structural components (e.g., making sure someone is available to help when the physician is unavailable) as well as components related to personal characteristics of the physician (e.g., respects and uses the expertise of non-physician team members.) The five components, in order of frequency of mention, are shown in Table 3. Each is discussed separately below. Respects and uses the expertise of nurses, social workers and other non-physician team members The largest percentage of comments regarding this component came from other health care workers and physicians. They described the need for physicians to respect and work well with all members of the team in order to provide high quality care. A healthcare worker noted that physicians must be “… willing to recognize the years of expertise we team members have amongst us and the collective experiences of the group, and tapping into those as a resource for their patient.” Health care workers described how involving all members of the team can tap into important sources of information not immediately available to the physician. A nurse said: “A person who needs a bath will tell the bath aide/nursing assistant more than they will ever dare tell a social worker. And asking about ‘what did you find out?’ Listen to the volunteer who's reading a novel to the person. ‘What information did that person give you? “ Helps the patient and family get consistent information from the entire health team With a large number of individuals responsible for different aspects of care for many dying patients, patients and families may receive confusing or contradictory information. Most comments related to this component focused on the issue of roles and responsibilities within a team. A family member presented an example of confusion in care:
We were down to the last week or two of Mom's life and the hospice and our doctor … were giving us conflicting information. We knew hospice was the expert in this case. But it caused a lot of dissension in my family. Lets the patient know who to call for different problems When patients and family members were faced with multiple physical complaints and illnesses, they wanted assurance that appropriate health care providers would be available for patient care. Family members expressed concern about knowing who to approach for care issues when facing a large number of professionals: A family member noted the need for “understanding that there are so many people involved so that we [need to] have an understanding of where this person fits in. We need to understand the roles of everybody, and who our main link is. Who do we go to talk about this or to get something done?” Another family member expressed frustration over not understanding the complexity of the health care structure: “I just called everybody because I didn't know who I could talk to. And the surgeon would say, ‘That’s not my area. You've got to call the oncologist.' And I just wanted anyone who would talk to me. I needed someone to follow through with me, to be with me.” Guides patient or family to hospice in a timely manner Comments from family members, as well as a small number of comments from patients, health care workers, and physicians focused on the need to provide access to hospice care in a timely fashion. Families were appreciative of referrals to this service: “The oncologist … guided us to hospice pretty quickly, so we were able to have that time at home with my dad.” Another family member said: “Our oncologist encouraged us to join a hospice. It helped my father die with dignity at home, and we were there with him. I wouldn't have chosen anything any other way.” Health care workers also appreciated physicians who helped with the transition to hospice. This involved not only referral but also guiding patients and family members through the initial process. A nurse called for:
… physicians that actually will walk a person and their family through getting into a hospice program. Not just saying, ‘Here’s the number to call,' or ‘People will be contacting you.’ Actually taking the time to explain kind of what it means, and not just saying ‘There’s nothing more we can do for you.' Makes sure there is someone available to help the patient when the physician is not available Patient and family access to contact information was considered important. This included obtaining information from the physician's office about how to contact the physician or staff as well as providing coverage when physicians were unavailable. A patient with AIDS wanted to be informed who he could turn to in the absence of his own physician. He called upon physicians to:
Talk to other doctors who could treat that same patient, and let us know who those doctors are. Make us familiar with a back-up doc. Let us know when they are going to be out of town. Most of the time when I haven't been able to go to my doc, I've been able to go to another one. But that's the main reason I wanted another doctor. Having a back-up is real important. Discussion Although health care systems are designed primarily to cure acute illness and minimize the impact of chronic illness, they are simultaneously responsible for addressing the needs of the dying. The complexity of these systems, along with the diverse health care needs of dying patients, make improving the quality of end-of-life care a difficult task. Although it seems clear that health care systems must change to support better care for dying patients,9, 12 the ways that individual physicians can work to facilitate these changes and overcome existing barriers are less clear. Physicians rarely work in isolation, divorced from the structural aspects of the system in which they work. They must constantly interact with and respond to the medical care setting in ways that influence the care they provide their patients. Dying patients may be especially vulnerable to inadequate care from these systems because of their severity of illness and disability and repeated encounters with physicians and health care systems. Therefore, interactions between physicians and the systems in which they work may have a profound influence on the care that dying patients receive. The experiences of focus group members in this study illuminate specific areas of interaction between physicians and health care systems that could be the focus of individual-level and system-level changes to improve the quality of care at the end of life. Based on the analyses of all twelve domains of physician skill at providing end-of-life care,14 the structural aspects of 1) accessibility and continuity and 2) team communication and coordination were found to be of enough importance to be included as domains. In the current analyses, we focus on the specific components of these domains. Data from these analyses suggest that physicians can develop relevant skills and attitudes to successfully interact with the health care system to ensure the highest quality of care. The skills and attitudes identified in this study include the need for physicians to be accessible throughout the course of the patient's experience of dying. They also include a willingness to provide sufficient time to work with patients and families to ensure that the complex issues and concerns of end-of-life care are adequately discussed. Extended waiting periods in offices and hospitals, poor or delayed communication between physicians and other team members, and delays in returning calls or scheduling appointments were major concerns of these dying patients and their families. This is an issue common to general health care where the organization of appointments and the amount of time allotted for visits concern many patients20 as well as serving as barriers to communication about end-of-life care.21 Unnecessary interruptions during general patient–clinician encounters are also problematic.22 Such issues have frequently been described as common problems in the accessibility of physicians in general medical care.23, 24, 25 Nonetheless, data from our study suggested that the best end-of-life care was seen as coming from physicians who, either directly or through their staff, were able to respond to patients and families in a timely way or explain the nature of unavoidable delays. Continuity of care throughout the process of end-of-life care was also important to patients and families and is an issue especially important to end-of-life care. Structural issues, such as policies about physician access to patients in nursing homes or hospices or physicians' practice structures that do not facilitate following patients in other settings, may interfere with continuity of care. Furthermore, withdrawal of the physician from active care for the patient, either because of a reduced need to offer active medical interventions, transfer of care to hospice, or emotional abandonment by a physician who finds end-of-life care difficult, was a major concern of patients, their families, and the health care-workers who care for them. Others have commented on the structural barriers to adequate hospice care including inadequate reimbursement for patient needs in the hospice setting,26 inconvenient location of hospice facilities and concern over loss of continued involvement with the patient ,13 and lack of knowledge or training of physician about the use of hospice care.13, 27 If the quality of end-of-life care is to be improved, it is important to find ways to address these diverse threats to continuity of care. Our data also outline specific physician skills necessary to coordinate the health care team and system in order to provide effective care and information to patients and families. Patients are faced with multiple medical specialists and facilities, and numerous demands on their time and energy. Care received from multiple caregivers requires coordination. A recent study suggested a higher quality dying experience when a single physician was identified as primarily responsible for the care of the patient and when one person, such as a patient care coordinator, facilitated the patient's care.28 Such structural changes may improve the quality of care received by patients at or nearing the end of life. While this discussion has focused on how structural issues can impede quality of end-of-life care, aspects of these issues can also become topics for the education of physicians. Specific skills of focusing on the patient during the interview and dealing with the physician's own reaction to death and loss are important components of medical education. Recognition of the importance of a single or coordinated source or information for the patient and information about the purpose and uses of hospice care should be included in the training of physicians. Respect and mutual recognition of the roles of other health care providers must be modeled in the training of physicians. While these concerns are important aspects of physician training, perhaps the stronger message of this study for physicians is to have an increased awareness of structural aspects of care that get in the way of quality of care. Physicians, through working with their own staff in private offices or larger organizations in hospitals or clinics, can help mold structures in practice that improve quality of care. This study has several limitations. Focus groups include only those individuals who agree to participate. Individuals with very negative experiences may be more likely to volunteer to express their concerns. However, comments in the transcripts do appear to be balanced, and participants were prompted to discuss both negative and positive experiences with physicians and their skills in end-of-life care. Another limitation of this study is that the methods do not allow us to definitively describe differences in the views of the different types of participants or disease groups. Other limitations with focus group studies include less control in group interviews than in individual interviews, variability in groups caused by unique social dynamics, limited generalizability, and inability to control for confounding variables.29 Although we implemented methods to limit domination of the discussion by one or a few participants, the number of comments coded for a component does not necessarily represent the relative importance of a component for each individual or the group as a whole. The numbers presented in the text and tables are best used as general guidelines rather than as a basis for statistical analysis. All participants resided in the Seattle area, and the racial and ethnic mix of participants was representative of this area. Future studies will need to assess the generalizability of these finding to other geographic areas and cultural groups. This study highlights the need for physicians and health care systems to improve accessibility to care at the end of life and increase coordination between health care team members when working with dying patients and their families. Individual physicians must improve their skills in focusing on patients' and families' needs during clinical encounters as well as ensuring access to care outside of these encounters. Communication within the health care team is extremely important, as is maintaining mutual respect for diverse roles in providing patient care. Impediments to care introduced by the structure of health care delivery assume great importance; physicians must be aware of and work through these impediments as much as possible in order to provide optimal care for their patients. Although some improvements in the care of dying patients can be made through increased awareness and improvement of physician performance, we must also focus on solving problems that exist within and between systems of care. Compensation by individual practitioners can provide only limited relief for major structural barriers that reduce quality of care. Effective interventions to improve quality of care at the end-of-life will need to consider both improvements that physicians can make in their day-to-day practice and improvements that require larger-scale structural change. Acknowledgements Project support was provided by the Open Society Institute Project on Death in America. The opinions expressed here are those of the authors and not necessarily those of the funding organization. References 1.
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