"I'm not ready for hospice": strategies for timely and effective hospice discussions

Hospice programs offer unique benefits for patients who are near the end of life and their families, and growing evidence indicates that hospice can provide high-quality care. Despite these benefits, many patients do not enroll in hospice, and those who enroll generally do so very late in the course of their illness. Some barriers to hospice referral arise from the requirements of hospice eligibility, which will be difficult to eliminate without major changes to hospice organization and financing. However, the challenges of discussing hospice create other barriers that are more easily remedied. The biggest communication barrier is that physicians are often unsure of how to talk with patients clearly and directly about their poor prognosis and limited treatment options (both requirements of hospice referral) without depriving them of hope. This article describes a structured strategy for discussing hospice, based on techniques of effective communication that physicians use in other "bad news" situations. This strategy can make hospice discussions both more compassionate and more effective.     

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.     

Decisions for hospice care in patients with advanced cancer

OBJECTIVES: To identify factors that may influence the decision of whether to enter a hospice program or to continue with a traditional hospital approach in patients with advanced cancer and to understand their decision-making process. DESIGN: Cross-sectional structured interview. SETTING: One community-based hospice and three university-based teaching hospitals. PARTICIPANTS: Two hundred thirty-four adult patients diagnosed with advanced lung, breast, prostate, or colon cancer with a life expectancy of less than 1 year: 173 hospice patients and 61 nonhospice patients receiving traditional hospital care. MEASUREMENTS: Hospice and nonhospice patients' demographic, clinical, and other patient-related characteristics were compared. Multivariate analysis was then conducted to identify variables associated with the hospice care decision in a logistic regression model. Information sources regarding hospice care and people involved in the hospice decision were identified. RESULTS: Patients receiving hospice care were significantly older (average age 69 vs 65 years, P =.009) and less educated (average 11.9 vs 12.9 years, P =.031) and had more people in their households (average 1.66 vs 1.16 persons, P =.019). Hospice patients had more comorbid conditions (1.30 vs 0.93, P =.035) and worse activities of daily living scores (7.01 vs 6.23, P =.030) than nonhospice patients. Hospice patients were more realistic about their disease course than their nonhospice counterparts. Patients' understanding of their prognoses affected their perceptions of the course of their disease. Hospice patients preferred quality of life to length of life. In the multivariate analysis, lower education level and greater number of people in the household were associated with the decision to enter hospice. A healthcare provider first told most of those who entered hospice about hospice. Families largely made the final decision to enter hospice (42%), followed by patients themselves (28%) and physicians (27%). CONCLUSION: The decision to enter hospice is related to demographic, clinical, and other patient-related characteristics. This study suggests that the decision-making process for hospice care in patients with advanced cancer is multidimensional. The healthcare community may better meet the end-of-life care needs of advanced cancer patients through enhanced communication with patients and families, including providing accurate prognoses and better understanding of patients' preferences and values.     

Death at Home Following a Targeted Advance-Care Planning Process at Home: The Kitchen Table Discussion

OBJECTIVE: To determine whether home health agency patients' preferences to die at home can be honored following a structured, professionally facilitated advance-care planning (ACP) process provided in the home. DESIGN: A case series of patients who were identified by their home health agency nurses as having a life-limiting illness and then referred for social service assessment, followed for at least 6 months, with median follow-up of 191 days. SETTING: A large, urban, home health agency owned by a not-for-profit integrated healthcare system. PARTICIPANTS: Eighty-four adult patients (median age 75, range 37-94) receiving home care services other than hospice. INTERVENTION: Formally structured social work visits at patients' homes to discuss end-of-life issues, with communication of results to home health nurses and attending physicians. Social workers performed standard psychosocial assessments, obtained patient and family preferences regarding end-of-life care, and provided education about hospice services. MEASUREMENTS: Acceptance of the ACP process, preferences for location of end-of-life care, location of care at the end of life, adequacy of timing of intervention as measured by length of life after ACP, and use of hospice services. RESULTS: Eighty-three of 84 participants (99%) were willing to complete an ACP process in the home setting. Of the 54 patients expressing a clear preference for location of end-of-life care, 46 (82%) wanted this care to be at home. Thirty-nine (46%) of the participants died within 90 days of ACP; 58 (69%) died by the end of the study. Forty-three (75%) of these deaths occurred at home or in a hospice residence. Fifty-one (61%) patients used home, residential, or nursing home-based hospice services during the study. CONCLUSION: In this series of seriously ill home health patients, most preferred to die at home and virtually all were willing to participate in a home-based ACP process. Facilitating ACP among such patients and their families was associated with end-of-life care at home. Use of hospice services was common following ACP in this population.     

End of Life Care for Older Russian Immigrants - Perspectives of Russian Immigrants and Hospice Staff

This pilot study examined immigrant Russian seniors and adult children’s views on end-of-life care, and hospice staff members’ experiences providing care to diverse immigrant clients, in areas of North Carolina with a high proportion of immigrants. Data were collected through individual in-depth interviews with informants, including Russian immigrant seniors, Russian adult children, and hospice staff, and analyzed by qualitative techniques. Findings indicate that there is little awareness of end-of-life care options among the Russian immigrant community in North Carolina. End-of-life care is rarely discussed within the family of first generation Russian immigrants but second-generation families are more open to doing so. First generation immigrant Russian seniors in our study do not seem to want any specialized end-of-life care often due to lack of awareness, and prefer family care. Second generation seniors’ attitudes are more accepting of this type of care. Hospice staff serve all those who seek care, receive training to serve diverse clients, and prioritize professional policies. There is sometimes potential for a gap between hospice policies regarding care and immigrant families’ expectations for care. Results suggest a great need for community outreach to immigrant groups to raise awareness of end-of-life care, including advance directives and hospice care and the role of interpreters in health care settings.     

Hospice care and the emergency department: rules, regulations, and referrals

Emergency clinicians often care for patients with terminal illness who are receiving hospice care and many more patients who may be in need of such care. Hospice care has been shown to successfully address the multidimensional aspects of the end-of-life concerns of terminally ill patients: dying with dignity, dying without pain, reducing the burden on family and caregivers, and achieving a home death, when desired. Traditional emergency medicine training may fail to address hospice as a system of care. When they are unfamiliar with the hospice model, emergency clinicians, patients, and caregivers may find it difficult to properly use and interact with these care services. Potential poor outcomes include the propagation of misleading or inaccurate information about the hospice system and the failure to guide appropriate patient referrals. This article reviews the hospice care service model and benefits offered, who may qualify for hospice care, common emergency presentations in patients under hospice care, and a stepwise approach to initiating a hospice care referral in the emergency department.     

A Cross-Cultural Comparison of Hospice Development in Japan,South Korea,and Taiwan

By 2050, one out of four people in Eastern Asia will be aged 65 and above. Thus, preparing to care for an older population is imperative. Addressing quality care for elders includes consideration of palliative and end-of-life care. A comparative study of the development of hospice and palliative care services in Japan, South Korea, and Taiwan, is presented, based on an extensive literature review. Both commonalities and differences were found. This article provides information on the origins and administration of hospice services in these three cases, as well as the degree of government involvement. Cultural and religious aspects are also considered, and obstacles to the spread of hospice services are discussed. This review compares experiences with hospice services and identifies factors that influence people’s perceptions and adoption of hospice. Stronger financial support for hospice and palliative care through the government and insurance programs would help increase the availability and use of services. Also, the need for continuing education of healthcare providers, patients, families, and the community is urgent. However, promotion of understanding of better pain management and the worth of hospice and palliative care must be conducted in ways that are sensitive to the cultural values and traditions in Japan, South Korea, and Taiwan. Only when hospice and palliative care can be viewed as an admirable choice for one’s loved ones, overcoming issues of truth telling, filial piety, worries about how one is judged, and religious considerations, will it become more widely accepted.     

An alternative in terminal care: results of the National Hospice Study

Hospice is a program of supportive services for terminally ill patients and their families, provided either at home or in designated inpatient settings, which is purported to improve patient and family quality of life at lower cost than conventional terminal care. The National Hospice Study was a multi-site, quasi-experimental study to compare the experiences of terminal cancer patients and their families in hospices with those of similar patients and families receiving conventional terminal care. The results indicate that, although care is different in hospices, e.g. lesser utilization of aggressive interventional therapy and diagnostic testing, patients' quality of life is similar in the hospice and conventional care systems with the exception of pain and symptom control, which may be better in the inpatient hospice setting. Hospice patients are more likely to die at home and their families are satisfied with that outcome. Otherwise, no consistent superiority of family outcome was associated with the hospice approach. The cost of hospice care is less than that of conventional terminal care for patients in hospices without inpatient facilities, but the cost of hospice appears to be equivalent to conventional care for patients in hospices having beds.     

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 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.     

Definitions and goals in palliative medicine

Especially in the last 15 years Palliative Care and Palliative Medicine in Germany have increasingly attracted professional and public attention and made remarkable progress. One of the characteristics of Palliative Care in Germany is the differentiation of palliative care from hospice care. Under different viewpoints structure, target groups and aims of Palliative Care have been under discussion in the last 30 years, which made an impact on different forms in the provision of care. Palliative therapy should be distinguished from supportive care and palliative medicine. The revised WHO-definition of Palliative Care broadened the aspects of care in a comprehensive and more holistic understanding of the social, emotional and spiritual needs of patients and their families, including bereavement; and, finally, interdisciplinary and team working issues. It is important to differentiate the palliative care approach from general and specialized palliative care provision for patients with incurable progressive illness and in old age. In Germany 10-12% of all dying patients per year are in need of a specialized palliative care service. The growth in the group of the "very old" will be an important challenge for palliative care in the near future.     

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 Care Preferences and Needs: Perceptions of Patients with Chronic Kidney Disease

Background and objectives: Despite high mortality rates, surprisingly little research has been done to study chronic kidney disease (CKD) patients'' preferences for end-of-life care. The objective of this study was to evaluate end-of-life care preferences of CKD patients to help identify gaps between current end-of-life care practice and patients'' preferences and to help prioritize and guide future innovation in end-of-life care policy.Design, setting, participants, & measurements: A total of 584 stage 4 and stage 5 CKD patients were surveyed as they presented to dialysis, transplantation, or predialysis clinics in a Canadian, university-based renal program between January and April 2008.Results: Participants reported relying on the nephrology staff for extensive end-of- life care needs not currently systematically integrated into their renal care, such as pain and symptom management, advance care planning, and psychosocial and spiritual support. Participants also had poor self-reported knowledge of palliative care options and of their illness trajectory. A total of 61% of patients regretted their decision to start dialysis. More patients wanted to die at home (36.1%) or in an inpatient hospice (28.8%) compared with in a hospital (27.4%). Less than 10% of patients reported having had a discussion about end-of-life care issues with their nephrologist in the past 12 months.Conclusions: Current end-of-life clinical practices do not meet the needs of patients with advanced CKD.Despite improvements in dialysis technology, the annual mortality rate of dialysis patients is 20% to 25% (1). The burden of symptoms for dialysis patients and those with advanced chronic kidney disease (CKD) who choose conservative care (i.e., no dialysis) is high (2), with the number and severity of symptoms (such as pain, nausea, anorexia, shortness of breath, insomnia, anxiety, and depression) rivaling those of many cancer patients (3–5). An increasing number of patients are dying after withdrawal of dialysis (10% to 15% in 1990; 20% in 2004) (1), representing the second leading cause of death after cardiovascular disease. Unfortunately, the majority of patients are not involved in these decisions because they lack decision-making capacity at the time the decision to withdraw dialysis is made (6). The vast majority of patients with CKD die in acute care facilities, without accessing palliative care services (7). Despite this, surprisingly little research has been done to study how these patients die or their preferences for end-of-life care. The objective of this study was to evaluate end-of-life care preferences of CKD patients. This will help identify gaps between current end-of-life care practice and patients'' preferences and will help prioritize and guide future innovation in end-of-life care policy.     

Managing Implantable Cardioverter-Defibrillators at End-of-Life: Practical Challenges and Care Considerations

Implantable cardioverter-defibrillators (ICDs) monitor for and terminate malignant arrhythmias. Given their potential as a life-saving therapy, an increasing number of people receive an ICD every year, and a growing number are currently living with ICDs. However, cardiopulmonary arrest serves as the final common pathway of natural death, and the appropriate management of an ICD near the end-of-life is crucial to ensure that a patient's death is not marked by further suffering due to ICD shocks. The tenets of palliative care at the end-of-life include addressing any medical intervention that may preclude dying with dignity; thus, management of ICDs during this phase is necessary. Internists are at the forefront of discussions about end-of-life care, and are likely to find discussions about ICD care at the end-of-life particularly challenging. The present review addresses issues pertaining to ICDs near the end of a patient's life and their potential impact on dying patients and their families. A multidisciplinary, patient-centered approach can ensure that patients receive the maximum benefit from ICDs, without any unintended pain or suffering.     

A physician’s guide to talking about end-of-life care

A large majority of patients and close family members are interested in discussing end-of-life issues with their physician. Most expect their physician to initiate such dialogue. End-of-life discussions, however, must go beyond the narrow focus of resuscitation. Instead, such discussions should address the broad array of concerns shared by most dying patients and families: fears about dying, understanding prognosis, achieving important end-of-life goals, and attending to physical needs. Good communication can facilitate the development of a comprehensive treatment plan that is medically sound and concordant with the patient’s wishes and values. This paper presents a practical 4-step approach to conducting end-of-life discussions with patients and their families: (1) Initiating Discussion, (2) Clarifying Prognosis, (3) Identifying End-of-Life Goals, and (4) Developing a Treatment Plan. By following these 4 steps, communication can be enhanced, fears allayed, pain and suffering minimized, and most end-of-life issues resolved comfortably, without conflict.     

Referral and timing of referral to hospice care in nursing homes: the significant role of staff members

PURPOSE: Given concerns about end-of-life care for many nursing home (NH) residents, this study sought to understand factors influencing hospice referral or nonreferral as well as timing of referral. DESIGN AND METHODS: We conducted semistructured interviews with personnel from seven participating NHs and two hospices. We interviewed NH directors of nursing regarding facility referral practices and conducted interviews with 34 NH nurses, 30 NH aides, and 17 hospice nurses knowledgeable about the factors that led to the hospice status of 32 NH decedents. Selected decedents varied by diagnosis and hospice status (received hospice for >7 days, 相似文献   

Caring for the patient with a fecal or urinary diversion in palliative and hospice settings: a literature review

The number of people requiring palliative or hospice care who have a fecal or urinary diversion is increasing, but the literature about the number of persons with a stoma receiving end-of-life care, or research to help guide that care, is very limited. A broader review of the literature and clinical experience indicate that several progressive changes will affect the ability of persons with a stoma to provide self-care, including motor, sensor, vision, and cognitive deficits. It is important for the wound ostomy continence nurse (WOCN) to anticipate these changes and take steps to address them. The lat- ter may include simplifying the equipment or accessories used and identifying and teaching caregivers how to manage the stoma or empty a continent diversion or neobladder. A thorough assessment and stoma care adjustment also are needed when peristomal complications such as a change in the abdominal plane, mucocutaneous separation, or caput medusa are observed. Medication absorption and its effect on fluid and electrolyte balances must be considered at all times, especially in persons with an ileostomy, and the elimination side effects of commonly used medications in the palliative and hospice care environment must be monitored and addressed. The Advanced Practice WOCN with knowledge about end-of-life care can help prevent complications and improve patient quality of life. Research is needed to increase understanding about the scope of these problems and best practices to address them and to understand the experience of patients with a stoma at end-of-life.     

Family perspectives on end-of-life care experiences in nursing homes

PURPOSE: The purpose of this study is to expand knowledge regarding end-of-life care received in nursing homes through the use of narrative interviews with family members close to the decedents. DESIGN AND METHODS: We conducted follow-up qualitative interviews with 54 respondents who had participated in an earlier national survey of 1,578 informants. Interviews were taped and transcribed and then coded by a five-member, multidisciplinary team to identify overarching themes. RESULTS: Respondents report that the needs of dying patients are often insufficiently addressed by health care professionals. Their low expectations of nursing homes and their experiences cause many to become vigilant advocates. Respondents report that physicians are often "missing in action," and they desire more and better trained staff. They indicate that regulations reinforce task-focused rather than person-centered care and add to patient and family burden. Although hospice services are reported to enhance end-of-life care, respondents also report late referrals and occasional misunderstandings about the role and scope of hospice. IMPLICATIONS: Sustained efforts on many fronts are needed to improve end-of-life care in nursing homes. Policy recommendations are suggested.