Why don't patients and physicians talk about end-of-life care? Barriers to communication for patients with acquired immunodeficiency syndrome and their primary care clinicians

BACKGROUND: Patients with chronic and terminal disease frequently do not talk to their physicians about end-of-life care. Interventions to improve this communication have generally been unsuccessful, suggesting that important barriers to this communication must exist. OBJECTIVES: To determine the barriers to and facilitators of patient-clinician communication about end-of-life care and to identify barriers and facilitators that are more common among those patients who are least likely to discuss end-of-life care: minorities and injection drug users. METHODS: We conducted a prospective study of 57 patients with advanced acquired immunodeficiency syndrome and their primary care clinicians who were recruited from university and private clinics. Barriers to and facilitators of end-of-life communication were identified from a prior qualitative study and assessed for frequency and importance and for an association with the occurrence and quality of end-of-life communication. RESULTS: Clinicians identified more barriers than patients. Barriers identified by patients and clinicians fell into 3 categories of potential interventions: education about end-of-life care, counseling to help address end-of-life concerns, and health care system changes to facilitate patient-clinician communication. Although none of the patient-identified barriers was associated with the occurrence of communication, 2 clinician-identified barriers were associated with less communication: "the patient has not been very sick yet" and "the patient isn't ready to talk about end-of-life care." Nonwhite patients were more likely to identify the following 2 barriers than white patients: "I feel that if I talk about death, it could bring death closer" and "I don't like to talk about the care I want if I get very sick." CONCLUSIONS: The diversity of barriers and facilitators relevant to patients with acquired immunodeficiency syndrome and their clinicians suggests that interventions to improve communication about end-of-life care must be focused on individual needs and must involve counseling interventions and health system changes in addition to education. Clinician barriers are more common and more strongly associated with the occurrence of end-of-life communication than patient barriers, suggesting that clinicians are an important target group for improving this communication.     

Barriers to communication about end-of-life care in AIDS patients

Objective

Patients and physicians do not adequately discuss patients’ preferences for medical care at the end of life. Our objective was to perform a qualitative study using focus groups to identify barriers and facilitators to communication about end-of-life medical care for patients with AIDS and their physicians.

Participants

Patients with AIDS and physicians with moderate or extensive HIV experience were recruited from clinics and community-based settings using network sampling. A total of 47 patients participated in six focus groups and 19 physicians participated in three groups.

Measurements and main results

Patients or physicians identified 29 barriers and facilitators to communication about end-of-life care. Many patients and physicians expressed discomfort talking about death and dying, and some felt that discussing end-of-life care could cause harm or even hasten death. Several patients expressed the view that a living will obviated the need for discussion with their physician. Previous experience of discrimination from the health care system was a strong barrier to end-of-life communication for some patients with AIDS. Some patients hesitate to bring up end-of-life issues because they want to protect their physicians from uncomfortable discussions. Many patients identified the quality of communication as an important facilitator to these difficult discussions.

Conclusions

Improving the quality of patient-physician communication about end-of-life care will require that physicians identify and overcome the barriers to this communication. To improve the quality of medical care at the end of life, we must address the quality of communication about end-of-life care.     

Talking it out: helping our patients live better while dying

Although dying is an inevitable part of the life cycle, there has been extensive political debate over end-of-life care. Participating in end-of-life care conversations can be emotionally challenging for everyone involved. Messages about serious or terminal illnesses can be very hard for patients and their families to hear, and physicians frequently struggle with the burden of delivering these messages. Still, evidence shows that conversations about end-of-life care options between physicians and patients can improve the quality of life of dying patients and help to relieve the emotional burden on surviving loved ones. Legislation to support these discussions by consistently reimbursing physicians for their time spent performing this service has been blocked on multiple occasions. More research on how to improve end-of-life care will enable health care providers to optimize treatment of their patients. Overcoming political divides to support end-of-life care conversations is needed to promote care that is consistent with patients' values and needs and is a key step in encouraging better quality of life for dying patients.     

Patient-physician communication about end-of-life care for patients with severe COPD.

Since patients with chronic obstructive pulmonary disease (COPD) infrequently discuss treatment preferences about end-of-life care with physicians, the goal of the present study was to identify which specific areas of communication about end-of-life care occur between patients with severe COPD and their physicians, and how patients rate the quality of this communication. A total of 115 patients with oxygen-dependent COPD, identified in pulmonary clinics in three hospitals and through an oxygen delivery company, were enrolled in this study. A 17-item quality of communication questionnaire (QOC) was administered to patients, along with other measures, including satisfaction with care. The patients reported that most physicians do not discuss how long the patients have to live, what dying might be like or patients' spirituality. Patients rated physicians highly at listening and answering questions. Areas patients rated relatively low included discussing prognosis, what dying might be like and spirituality/religion. Patients' assessments of physicians' overall communication and communication about treatment correlated well with the QOC. Patients' overall satisfaction with care also correlated significantly with the QOC. In conclusion, this study identifies areas of communication that physicians do not address and areas that patients rate poorly, including talking about prognosis, dying and spirituality. These areas may provide targets for interventions to improve communication about end-of-life care for patients with chronic obstructive pulmonary disease. Future studies should determine the responsiveness of these items to interventions, and the effect such interventions have on patient satisfaction and quality of care.     

There is hope for the future: national survey results reveal that geriatric medicine fellows are well-educated in end-of-life care

OBJECTIVES: To assess the status of geriatric medicine (GM) fellows' training experiences in end-of-life care via self-report. DESIGN: Anonymous surveys completed by mail, Web access, and telephone. SETTING: U.S. accredited GM fellowship training programs. PARTICIPANTS: Two hundred ninety-six surveys were sent to graduating GM fellows in 1- and 2-year programs across the Unites States. MEASUREMENTS: Measurements assessed self-reported attitudes, quantity and quality of end-of-life care education, preparation to provide care, and perceived value of caring for dying patients. RESULTS: Response rate was 74%. Ninety-five percent or more of respondents held positive views about physicians' responsibility and ability to help dying patients. Seventy percent of fellows had completed a rotation focused on end-of-life care. Fellows who had done such rotations rated their end-of-life care education as highly as their overall geriatrics training. Fellows frequently received teaching in many end-of-life care topics, with lower rates of teaching how to say goodbye and responding to requests for assisted suicide. Overall, fellows felt well prepared to care for dying patients. Four factors independently predicted such preparedness: having had a palliative or end-of-life care rotation, being female, having been taught how to say goodbye to patients, and perceiving that it is important to attending physicians that fellows learn to care for dying patients. CONCLUSION: GM fellows feel their end-of-life care education is excellent and feel prepared to take care of dying patients. It is critical that geriatricians in training have access to and take advantage of palliative and end-of-life care rotations.     

Patients' perspectives on physician skill in end-of-life care: differences between patients with COPD,cancer, and AIDS

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 = 24), AIDS (n = 36), or cancer (n = 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.     

Death and dying from old people's point of view. A literature review

Providing high-quality end-of-life care to older people is a requirement especially for countries with a high proportion of old and very old people. This calls for an understanding of older people's view of death and dying, and one way forward is to investigate the current knowledge base. This study aimed at reviewing the literature of empirical studies about older people's view of death and dying, whether in a terminal phase of life or not. A total of 33 publications were included, identified in a stepwise literature search done in Medline, CINAHL and PsychInfo, using the terms "death", "attitude to death", "death" and "dying" in combination with "aged". Very few studies focused solely on the oldest old. The designs were mainly cross-sectional, quantitative or qualitative, using personal interviews. Some common themes of importance for further research were revealed, such as older people's readiness to talk about death and dying, conceptions of death, after-death and dying, and were seemingly related to anxiety about death, the impact on and of those close by, having both negative and positive connotations, especially related to balancing closeness, being a burden and dependency, death anxiety and its possible antecedents, the fine line between natural sadness and suffering from depression, and worry about the end-of-life phase. The lack of studies dealing with older people's view of death and dying, and the heterogeneity with regard to research questions and samples implies that findings may serve mainly as inspiration for further research.     

End-of-life care in a voluntary hospitalist model: effects on communication, processes of care, and patient symptoms

PURPOSE: To assess the effects of hospitalist care on communication, care patterns, and outcomes of dying patients. METHODS: We examined the charts of 148 patients who had died at a community-based, urban teaching hospital, comparing the end-of-life care provided by community physicians and hospitalists. RESULTS: Patients of hospitalists and community-based physicians were similar in age, race, severity of acute illness, and difficulties with activities of daily living. After admission, hospitalists had discussions with patients or their families regarding care more often than did community physicians (91% [67/74] vs. 73% [54/74], P = 0.006) and were more likely to document these discussions themselves. Among patients who were "full code" at admission, there was a trend towards patients of hospitalists receiving comfort care more frequently at the time of death (50% [25/48] vs. 37% [15/40], P = 0.14). Although there were no differences in the use of medications such as long-acting opioids, no symptoms in the 48 hours prior to death were more likely to be noted for patients of hospitalists (47% [n = 35] vs. 31% [n = 23]), P = 0.03). After adjustment for confounding factors in multivariable models, only findings regarding documentation of discussions and symptoms remained statistically significant. CONCLUSION: Hospitalists at a community-based teaching hospital documented substantial efforts to communicate with dying patients and their families, which may have resulted in improved end-of-life care.     

Barriers to excellent end-of-life care for patients with dementia

While great strides have been made recently in improving end-of-life care in the United States, people with dementia often die with inadequate pain control, with feeding tubes in place, and without the benefits of hospice care. In this paper, we discuss the most important and persistent challenges to providing excellent end-of-life care for patients with dementia, including dementia not being viewed as a terminal illness; the nature of the course and treatment decisions in advanced dementia; assessment and management of symptoms; the caregiver experience and bereavement; and health systems issues. We suggest approaches for overcoming these barriers in the domains of education, clinical practice, and public policy. As the population ages, general internists increasingly will be called upon to provide primary care for a growing number of patients dying with dementia. There are great opportunities to improve end-of-life care for this vulnerable and underserved population.     

Advance care planning in COPD

The review aims to discuss current concepts in advance care planning (ACP) for patients with COPD, and to provide a narrative review of recent trends in ACP and end-of-life care for patients with COPD. ACP, which involves patient-clinician communication about end-of-life care, can improve outcomes for patients and their families, and may be especially relevant for patients with COPD. Effective patient-clinician communication is needed to inform and prepare patients about their diagnosis, treatment, prognosis and what dying might be like. It is important for clinicians to understand patients' values and preferences for life-sustaining treatments as well for their site of terminal care. Unfortunately, discussions about ACP and end-of-life care in current practice are scarce, and their quality is often poor. ACP can improve outcomes for patients and their relatives. The challenge remains in the practical implementation of ACP in the clinical setting, especially for patients with COPD. ACP should be implemented alongside curative-restorative care for patients with advanced COPD. The disease course of COPD is such that there will rarely be a clear transition point predicting the timing of the need for initiation of end-of-life care. Future studies should focus on interventions that facilitate concurrent ACP and prepare patients for making in-the-moment decisions, with the goal of improving the quality of end-of-life care.     

Truth Telling and Treatment Strategies in End-of-Life Care in Physician-Led Accountable Care Organizations: Discrepancies Between Patients’ Preferences and Physicians’ Perceptions

Providing patient-centered care from preventive medicine to end-of-life care in order to improve care quality and reduce medical cost is important for accountable care. Physicians in the accountable care organizations (ACOs) are suitable for participating in supportive end-of-life care especially when facing issues in truth telling and treatment strategy. This study aimed to investigate patients’ attitudes toward truth telling and treatment preferences in end-of-life care and compare patients’ attitudes with their ACOs physicians’ perceptions.This nationwide study applied snowball sampling to survey physicians in physician-led ACOs and their contracted patients by questionnaire from August 2010 to July 2011 in Taiwan. The main outcome measures were beliefs about palliative care, attitudes toward truth telling, and treatment preferences.The data of 314 patients (effective response rate = 88.7%) and 177 physicians (88.5%) were analyzed. Regarding truth telling about disease prognosis, 94.3% of patients preferred to be fully informed, whereas only 80% of their physicians had that perception (P < 0.001). Significant differences were also found in attitudes toward truth telling even when encountering terminal disease status (98.1% vs 85.3%). Regarding treatment preferences in terminal illness, nearly 90% of patients preferred supportive care, but only 15.8% of physicians reported that their patients had this preference (P < 0.001).Significant discrepancies exist between patients’ preferences and physicians’ perceptions toward truth telling and treatment strategies in end-of-life care. It is important to enhance physician–patient communication about end-of-life care preferences in order to achieve the goal of ACOs. Continuing education on communication about end-of-life care during physicians’ professional development would be helpful in the reform strategies of establishing accountable care around the world.     

A survey on the view of end-of-life care in the elderly -a comparison among elderly patients, family members. physicians, nurses, and other caregivers

AIM: The purpose of this study was to investigate the role of geriatric physicians in end-of-life care through surveying elderly patients, their families, and health-care providers including physicians, nurses, and other caregivers, in order to determine what comprises good end-of-life care. METHODS: The survey respondents comprised 148 elderly patients, 76 members of their families, 105 physicians, 784 nurses, and 193 other caregivers. The survey asked respondents to rate the importance of (a) indicators of end-of-life in the elderly and (b) 17 aspects of quality of end-of-life care. RESULTS: With respect to indicators of end-of-life in the elderly, a patient being consistently critically ill was rated highly by all health-care providers (>70% responded that this indicated end-of-life). Being unable to perform the activities of daily life was considered an indicator of end-of-life by 36% of patients and 45% of their family members, but only by 23% of physicians, 8% of nurses, and 24% of other caregivers. For quality of end-of-life care, four items were rated as being important by all groups (>70% in each group): palliation of pain, freedom from anxiety regarding death, ability to spend time with close friends or family, and being respected. However, respecting the patient's principles and lifestyle was thought to be less important by patients (16.1%) and family members (28.2%) than it was by physicians (63.8%). Death at home was also thought to be less important by patients (21.0%) and family members (7.1%) than by physicians (37.5%). CONCLUSION: Elderly patients and their families have different views from their health-care providers on matters related to good end-of-life care. Geriatric physicians should pay attention to not only the care of patients' physical needs, but also other needs of the patients and their families.     

The last 48 hours of life in long-term care: a focused chart audit

OBJECTIVES: As a component of palliative care educational program development, the faculty at the University of Ottawa Institute of Palliative Care wished to assess end-of-life care for patients in long-term care (LTC) settings to develop an educational strategy for physicians. DESIGN: A chart audit, focusing on the last 48 hours of life of residents dying in LTC facilities. SETTING: Five LTC facilities in a city in Canada. PARTICIPANTS: Residents who died in the LTC facilities in a 12-month period. Those who died suddenly (i.e., with no palliation period) or in a hospital were excluded. MEASUREMENTS: Symptoms highlighted in the literature as commonly found in the terminally ill and the matching treatments were recorded on an audit form created by the authors. Included were pain, dyspnea, noisy breathing, delirium, dysphagia, fever, and myoclonus. RESULTS: One hundred eighty-five charts were reviewed. A large number of patients were cognitively impaired. Cancer was the final diagnosis in 14% of cases. Respiratory symptoms were the most prevalent symptom, with dyspnea being first and noisy breathing third. Pain was second, with a prevalence similar to that found in studies of cancer patients. Dyspnea was not treated in 23% of the patients with this symptom; opioids were used in only 27% of cases with dyspnea. Ninety-nine percent of patients who experienced pain were treated for it. Less than one-third of patients with noisy breathing were treated. Delirium was not treated in 38% of the cases, and no anti-dopaminergic medications were administered. Nurses were primarily responsible for documenting end-of-life issues, supporting the families of the dying residents, and communicating with other team members. CONCLUSION: The focused chart audit identified the high prevalence of cognitive impairment in the patient population, which complicates symptom management. Respiratory symptoms predominated in the last 48 hours of life. This symptom profile differs from that of cancer patients, who, according to the literature, have more pain and less respiratory trouble. Management of symptoms was variable. Nurses played a crucial role in the care of dying residents through their documentation and communication of end-of-life issues. Appropriate palliative care education can provide knowledge and skills to all health-care professionals, including physicians, and assist them in the control of symptoms and improvement of quality of life for patients dying in LTC facilities.     

Attitudes and practices of U.S. oncologists regarding euthanasia and physician-assisted suicide

BACKGROUND: The practices of euthanasia and physician-assisted suicide remain controversial. OBJECTIVE: To achieve better understanding of attitudes and practices regarding euthanasia and physician-assisted suicide in the context of end-of-life care. DESIGN: Cohort study. SETTING: United States. PARTICIPANTS: 3299 oncologists who are members of the American Society of Clinical Oncology. MEASUREMENTS: Responses to survey questions on attitudes toward euthanasia and physician-assisted suicide for a terminally ill patient with prostate cancer who has unremitting pain, requests for and performance of euthanasia and physician-assisted suicide, and sociodemographic characteristics. RESULTS: Of U.S. oncologists surveyed, 22.5% supported the use of physician-assisted suicide for a terminally ill patient with unremitting pain and 6.5% supported euthanasia. Oncologists who were reluctant to increase the dose of intravenous morphine for terminally ill patients in excruciating pain (odds ratio [OR], 0.61 [95% CI, 0.48 to 0.77]) and had sufficient time to talk to dying patients about end-of-life care issues (OR, 0.79 [CI, 0.71 to 0.87]) were less likely to support euthanasia or physician-assisted suicide. During their career, 3.7% of surveyed oncologists had performed euthanasia and 10.8% had performed physician-assisted suicide. Oncologists who were reluctant to increase the morphine dose for patients in excruciating pain (OR, 0.58 [CI, 0.43 to 0.79]) and those who believed that they had received adequate training in end-of-life care (OR, 0.86 [CI, 0.79 to 0.95]) were less likely to have performed euthanasia or physician-assisted suicide. Oncologists who reported not being able to obtain all the care that a dying patient needed were more likely to have performed euthanasia (P = 0.001). CONCLUSIONS: Requests for euthanasia and physician-assisted suicide are likely to decrease as training in end-of-life care improves and the ability of physicians to provide this care to their patients is enhanced.     

Meeting physicians' responsibilities in providing end-of-life care.

Despite many clinical examples of exemplary end-of-life care, a number of studies highlight significant shortcomings in the quality of end-of-life care that the majority of patients receive. In part, this stems from inconsistencies in training and supporting clinicians in delivering end-of-life care. This review describes the responsibilities of pulmonary and critical care physicians in providing end-of-life care to patients and their families. While many responsibilities are common to all physicians who care for patients with life-limiting illness, some issues are particularly relevant to pulmonary and critical care physicians. These issues include prognostication and decision making about goals of care, challenges and approaches to communicating with patients and their family, the role of interdisciplinary collaboration, principles and practice of withholding and withdrawing life-sustaining measures, and cultural competency in end-of-life care.     

Advance Directives and Communication Skills of Prehospital Physicians Involved in the Care of Cardiovascular Patients

Advance directives (AD) were developed to respect patient autonomy. However, very few patients have AD, even in cases when major cardiovascular surgery is to follow. To understand the reasons behind the low prevalence of AD and to help decision making when patients are incompetent, it is necessary to focus on the impact of prehospital practitioners, who may contribute to an increase in AD by discussing them with patients. The purpose of this study was to investigate self-rated communication skills and the attitudes of physicians potentially involved in the care of cardiovascular patients toward AD.Self-administered questionnaires were sent to general practitioners, cardiologists, internists, and intensivists, including the Quality of Communication Score, divided into a General Communication score (QOCgen 6 items) and an End-of-life Communication score (QOCeol 7 items), as well as questions regarding opinions and practices in terms of AD.One hundred sixty-four responses were received. QOCgen (mean (±SD)): 9.0/10 (1.0); QOCeol: 7.2/10 (1.7). General practitioners most frequently start discussions about AD (74/149 [47%]) and are more prone to designate their own specialty (30/49 [61%], P < 0.0001). Overall, only 57/159 (36%) physicians designated their own specialty; 130/158 (82%) physicians ask potential cardiovascular patients if they have AD and 61/118 (52%) physicians who care for cardiovascular patients talk about AD with some of them.The characteristics of physicians who do not talk about AD with patients were those who did not personally have AD and those who work in private practices.One hundred thirty-three (83%) physicians rated the systematic mention of patients’ AD in the correspondence between physicians as good, while 114 (71%) at the patients’ first registration in the private practice.Prehospital physicians rated their communication skills as good, whereas end-of-life communication was rated much lower. Only half of those surveyed speak about AD with cardiovascular patients. The majority would prefer that physicians of another specialty, most frequently general practitioners, initiate conversation about AD. In order to increase prehospital AD incidence, efforts must be centered on improving practitioners’ communication skills regarding death, by providing trainings to allow physicians to feel more at ease when speaking about end-of-life issues.     

Quality of dying and death in two medical ICUs: perceptions of family and clinicians

OBJECTIVE: We compared perceptions of the quality of dying and death in the ICU across nurses, resident physicians, attending physicians, and family members. The aim was to obtain a surrogate assessment of the quality of the dying process and examine differences in the perceptions of different types of raters. DESIGN: Cross-sectional survey of family members and ICU clinicians conducted following the death of enrolled patients. SETTING: Two medical ICUs at academic tertiary care medical centers. PATIENTS: Patients dying in the ICU (n = 68). MEASUREMENTS AND RESULTS: The previously validated Quality of Dying and Death (QODD) instrument was modified for use in the ICU. Within 48 h of the time of death, the nurse, resident, and attending physician caring for the patient were asked to complete the QODD. One month following the death, a designated family member was contacted and the QODD was administered on the telephone. Family members and attending physicians gave the most favorable ratings of death, while nurses and residents provided less favorable ratings. Significant differences between these groups were notable (p < 0.01) on items related to patient autonomy: maintaining dignity, being touched by loved ones, and the overall quality of death. CONCLUSIONS: The perception of dying and death in the ICU varies considerably between nurses, attending physicians, resident physicians, and family members. Further studies are needed to explain these differences and determine the utility of the ICU QODD instrument for assessing and improving the quality of end-of-life care in the ICU.