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.     

Prostate cancer screening practices and beliefs

OBJECTIVE: To examine primary care physician prostate-specific antigen (PSA) testing and prostate cancer screening beliefs, practices, and trends over time. DESIGN: Longitudinal physician survey. SETTING: Community and academic primary care practices in a major East Coast city. PARTICIPANTS: Physicians with > or =100 patients enrolled in an HMO serving 90,000 patients were surveyed in 1993 and 1998 regarding prostate cancer screening beliefs and practices. In 1993, 176 physicians (76%) completed the survey. In 1998, 76% of the 1993 respondents responded to a second survey. Associations between and changes over time in beliefs and self-reported PSA testing were analyzed. MEASUREMENTS AND MAIN RESULTS: Physicians reported ordering PSA tests in 73% of health maintenance exams (HMEs) in 1993 and 81% of HMEs in 1998. PSA testing significantly increased between 1993 and 1998 with 43% of physicians reporting increased testing and only 13% reporting reduced testing. Between 1993 and 1998, physician attitudes favoring PSA testing increased although less than half of physicians believed that aggressive early treatment improved patient outcomes. Community versus academic practice location was also associated with PSA testing. CONCLUSIONS: Physicians reported high and increasing rates of PSA testing from 1993 to 1998 and more favorable attitudes toward PSA testing. Despite conflicting expert recommendations and a lack of consistent, high-quality supporting evidence, PSA screening appears to be increasingly considered a standard of care by practicing physicians. However, beliefs other than improved patient outcomes due to screening may be the primary drivers of increased PSA testing.     

A Cross-Cultural Study on Behaviors When Death Is Approaching in East Asian Countries: What Are the Physician-Perceived Common Beliefs and Practices?

The primary aim of this study was to explore common beliefs and practices when death is approaching in East-Asian countries.A cross-sectional survey was performed involving palliative care physicians in Japan, Korea, and Taiwan. Measurement outcomes were physician-perceived frequencies of the following when patient death was approaching: (1) reluctance to take part in end-of-life discussions, (2) role of family members, (3) home death, and (4) circumstances surrounding death.A total of 505, 211, and 207 responses were obtained from Japanese, Korea, and Taiwan physicians, respectively. While 50% of the Japanese physicians reported that they often or very often experienced families as being reluctant to discuss end-of-life issues, the corresponding figures were 59% in Korea and 70% in Taiwan. Two specific reasons to avoid end-of-life discussion, “bad things happen after you say them out loud” and “a bad life is better than a good death” were significantly more frequently observed in Taiwan. Prioritizing the oldest of the family in breaking bad news and having all family members present at the time of death were significantly more frequently observed in Korea and Taiwan. Half of Taiwanese physicians reported they often or very often experienced the patients/family wanted to go back home to die because the soul would not be able to return from the hospital. In all countries, more than 70% of the physicians reported certain family members were expected to care for the patient at home. At the time of death, while no Japanese physicians stated that they often experienced patients wanted a religious person to visit, the corresponding figure in Korean and Taiwan was about 40%. Uncovered expression of emotion was significantly frequently observed in Korean and Taiwan, and 42% of the Japanese physicians reported family members cleaned the dead body of the patient themselves.There seem to be significant intercountry differences in beliefs and practices when death is approaching in East Asian countries. Future studies on direct observations of patients and families are needed.     

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.     

Integrating Spirituality and Culture with End-of-Life Care in Medical Education

ABSTRACT

To provide high-quality care that is responsive to spiritual concerns within a multicultural context, student physicians and other health care professionals must develop skills in spiritual care and be able to do so with patients from different cultures and different spiritual and religious backgrounds, particularly at the end of life. This article describes the experience of successfully introducing a curriculum on spirituality and multicultural literacy into the required Family Medicine Clerkship at Stanford University School of Medicine. Rather than a program of separate classes on spirituality, culture, and end-of-life care, an effective curriculum includes a matrix of learning activities that address: 1) a cross-cultural approach to spiritual needs, 2) spirituality at the end of life, 3) the impact of cultural values at the end of life, 4) the ways in which cultural and spiritual needs interact at the end of life, and 5) the interface between medical culture and a patient's culture. Integrating spirituality and culture with end-of-life care into the fabric of the medical school curriculum is an essential step toward serving our increasingly multicultural and multireligious society.     

Resuscitating advance directives

Advance directives have not fulfilled their promise of facilitating decisions about end-of-life care for incompetent patients. Many legal requirements and restrictions concerning advance directives are counterproductive. Requirements for witnessing or notarizing advance directives make it difficult for patients to complete a written directive during a physician visit. State laws that establish a hierarchy of family surrogates for incompetent patients who have not appointed a proxy are inflexible and may not apply to common clinical situations. Advance directives would be more useful if they emphasized discussing end-of-life care with physicians rather than completing a legal document. State laws should be revised to encourage patients to discuss advance directives with physicians and to complete them during an office visit. Such patient-physician discussions about end-of-life care can lead to more informed patient decisions. Procedures for written advance directives should be simplified. Patients should be able to designate health care proxies through oral statements to physicians. These reforms will encourage discussions between patients and physicians about advance directives and may lead to more informed decisions near the end of life.     

Attitudes of Asian-Indian Hindus toward end-of-life care

The population of older adults in the United States is increasing in cultural diversity. Thus, an appreciation of cultural perspectives regarding end-of-life care may benefit practicing physicians. This article addresses end-of-life care issues from the perspective of Hinduism--a faith embraced by a growing demographic of the U.S. population-and also reviews basic Hindu philosophical concepts salient to caring for patients at the end of life.     

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.     

Community physicians who provide terminal care.

BACKGROUND: Most dying patients are treated by physicians in community practice, yet studies of terminal care rarely include these physicians. OBJECTIVE: To examine the frequency of life-sustaining treatment use and describe what factors influence physicians' treatment decisions in community-based practices. METHODS: Family members and treating physicians for decedents 65 years and older who died of cancer, congestive heart failure, chronic lung disease, cirrhosis, or stroke completed interviews about end-of-life care in community settings. RESULTS: Eighty percent of eligible family and 68.8% of eligible physicians participated (N = 165). Most physicians were trained in primary care and 85.4% were primary care physicians for the decedents. Physicians typically knew the decedent a year or more (68.9%), and 93.3% treated them for at least 1 month before death. In their last month of life, 2.4% of decedents received cardiopulmonary resuscitation, 5.5% received ventilatory support, and 34.1% received hospice care. Family recalled a discussion of treatment options in 78.2% of deaths. Most discussions (72.1%) took place a month or more before death. Place of death, cancer, and having a living will were independent predictors of less aggressive treatment before death. Physicians believed that advanced planning and good relationships were the major determinants of good decision making. CONCLUSIONS: Community physicians use few life-sustaining treatments for dying patients. Treatment decisions are made in the context of long-term primary care relationships, and living wills influence treatment decisions. The choice to remain in community settings with a familiar physician may influence the dying experience.     

Communicating with dying patients within the spectrum of medical care from terminal diagnosis to death

BACKGROUND: Efforts to improve communication between physicians and dying patients have been unsuccessful, and guidelines for improving patient-physician communication about end-of-life care are based primarily on expert opinion. This study assessed which aspects of communication between patients and physicians are important in end-of-life care. METHODS: Twenty focus groups were held with 137 individuals, including patients with chronic and terminal illnesses, family members, health care professionals from hospice or acute care settings, and physicians with expertise in end-of-life care. Focus group analyses determined domains of physician skill at end-of-life care. Communication with patients was identified as one of the most important domains. Analyses of components important in communicating with dying patients and their families were performed. RESULTS: The following 6 areas were of central importance in communicating with dying patients: talking with patients in an honest and straightforward way, being willing to talk about dying, giving bad news in a sensitive way, listening to patients, encouraging questions from patients, and being sensitive to when patients are ready to talk about death. Within these components, subthemes emerged that provide guidelines for physicians and educators. Dying patients also identified the need to achieve a balance between being honest and straightforward and not discouraging hope. CONCLUSIONS: Several areas emerged for physicians to focus their attention on when communicating with dying patients. These findings provide guidance in how to improve this communication. They also highlight the need to approach communication about end-of-life care as a spectrum that requires attention from the time of a terminal diagnosis through death.     

The impact of an end-of-life communication skills intervention on physicians-in-training

The palliative medicine literature consistently documents that physicians are poorly prepared to help patients experience a "good death" and are often unaware of their ill patients' preferences for end-of-life care. The present study, enrolling 150 physicians, sought to improve their communication skills for end-of-life care. We found significant attitudinal changes and a greater degree of self-rated competence in delivering end-of-life care for those in the intervention group. This study used a novel approach to train physicians to be better equipped to conduct difficult goals of care conversations with patients and their families at end-of-life.     

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.     

The Impact of an End-of-Life Communication Skills Intervention on Physicians-in-Training

The palliative medicine literature consistently documents that physicians are poorly prepared to help patients experience a “good death” and are often unaware of their ill patients' preferences for end-of-life care. The present study, enrolling 150 physicians, sought to improve their communication skills for end-of-life care. We found significant attitudinal changes and a greater degree of self-rated competence in delivering end-of-life care for those in the intervention group. This study used a novel approach to train physicians to be better equipped to conduct difficult goals of care conversations with patients and their families at end-of-life.     

End-of-life health care planning among young-old adults: an assessment of psychosocial influences

OBJECTIVES: End-of-life planning among healthy older adults may protect them from unwanted medical treatments in later life, in the event that they become incapable of making health care decisions for themselves. We explore two formal and one informal components of end-of-life planning (living will, durable power of attorney for health care, and discussions) and assess whether one's health and health care encounters, personal beliefs, and experience with others' deaths affect these practices. METHODS: Using two waves of data (1992-1993 and 2004) from the Wisconsin Longitudinal Study, we estimated binary and multinomial logistic regression models to predict end-of-life preparations among a sample of community-dwelling persons aged 64-65 (N=3,838). RESULTS: Recent hospitalizations, personal beliefs (Death Avoidance and the belief that doctors should control health care decisions), and recent experience with the painful death of a loved one all influence end-of-life preparations. Consistent with past studies, we also found that education, gender, marital status, and religious affiliation affect end-of-life planning. DISCUSSION: Health care providers may encourage end-of-life preparations by assuaging patients' death anxiety and fostering decision-making autonomy. Initiating discussions about recent deaths of loved ones may be an effective way to trigger patients' own end-of-life preparations.     

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.     

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.