The impact of the community on the dying process at Hospice of Frederick County.

Hospice of Frederick County is in the very early phases of reaching out beyond the health care system into the community in order to help individuals and families cope with the death of a loved one. By listening to the stories that people have shared with staff and volunteers, Hospice of Frederick County has identified the need for hospice programs that deal with the workplace, the media, recreation, churches, schools, clubs, and all other areas of community life. The response from the community thus far has indicated their approval. However, the community programs depend on volunteers to become operational. A beginning has been made, and time will tell if this volunteer-intensive, community-wide program is right for this community.     

Continuum of care comes full circle. Adding hospice care allows a Denver system to better meet patient needs

In November 1993 Hospice of Peace, a home hospice program in Denver, was reorganized under a new joint sponsorship of Provenant Health Partners and Catholic Charities and Community Services. Home hospice completes Provenant's continuum of healthcare. Based on the campus of Provenant Senior Life Center, Hospice of Peace employs multidisciplinary professionals who care for patients and their family care givers in their homes. Each hospice team works with a patient's physician and comes from a pool of primary care nurses, certified nurse assistants, social workers, counselors, pastoral care counselors, and specially trained volunteers and bereavement counselors. Respect for human life at all stages is the ethic behind the organizations' hospice efforts. Even at life's end, when aggressive medical treatment is no longer appropriate, healthcare professionals can enhance patients' quality of life and provide bereavement support to their loved ones. Just as Catholic healthcare addresses the spiritual component of healing, so it addresses the spiritual component of dying.     

Introducing hospice into allied health curricula: a challenge for educators

Including hospice, as a concept of care, into existing allied health curricula is very important. Hospice should be integrated into the curricula of allied health programs. In addition to offering courses on hospice care, there are many novel ideas for exposing students to aspects of hospice care including grand rounds, self-instruction packets, journal clubs, honors program presentations, monthly forums, and clerkships. Federal funding is important to support and develop hospice training as well as other resources.     

Hospice: a comprehensive program

Having begun operations in 1991 with six employees, four volunteers, and three patients, the St. Louis-based Incarnate Word Family and Alzheimer's Hospice today boasts 44 professional employees, 6 clerical staff, and more than 100 volunteers. The hospice offers a medically supervised home care program in which staff work closely with patients and families throughout the illness and bereavement period. Using a palliative rather than curative approach, the Incarnate Word Family and Alzheimer's Hospice focuses on enhancing the remaining life of the patient. Patients are enrolled based on their need for care, not on their ability to pay for services. To meet the unique needs of certain patients, the hospice offers a variety of specialized services, including pediatric, Alzheimer's, and AIDS care. Collaborative efforts with local agencies include cross-training, continuing education, client referrals, and support services. In 1993 Incarnate Word introduced hospice services to area residential care facilities (RCFs). The program enables RCF residents who develop life-limiting illnesses to remain in the place that they have come to know as home. In March 1994 Incarnate Word Family and Alzheimer's Hospice opened a branch office in north St. Louis. The new location enables the hospice to serve more people and creates an additional resource for physicians treating terminally ill patients. Volunteers provide rest breaks for care givers, help with meal preparation and simple housekeeping, run errands, comfort patients and family, and listen when others may find their story too overwhelming.     

Hospice research: the importance of program participation.

Hospice research is needed in order to understand the complex phenomena of holistic care for terminally ill persons and their families. Hospice program participation is key to future hospice research efforts. The purpose of this article is to encourage hospice programs to participate in hospice research. The discussion includes why research is done, who undertakes a research project, the role of institutional review boards in assuring rights of human subjects and potential strategies for recruitment of research subjects. The authors use their experiences with conducting hospice research to illustrate potential recruitment strategies.     

Why hospice day care?

Hospice day care would have to be flexible in order to meet individual needs. It would offer security, warmth and tender loving care, providing an opportunity for patients to socialize and maintain their quality of life. Hopefully day care would provide earlier hospice admissions--extending the continuity of care. Recently the hospice day care standards developed in Michigan were published in the American Journal of Hospice Care. They were developed to provide guidelines for policies and procedures which would assure a quality program. The future of hospice day care depends on further development and implementation of these beginning standards.     

浅谈健康教育在居家临终关怀中的应用

癌症患者的直系亲属是健康教育的重点人群。癌症防控前移,除了大众化的健康促进外,在居家临终关怀中充分利用健康教育的优势,针对性强,接受程度高,特别是看着亲人受病痛折磨时候或离去时,在万般无奈及悲痛的同时,对生命的价值理解更深更透,珍惜生命,承担起家庭、社会的责任感更强,此时开展以病因预防为主的健康教育是最佳时间。切实抓紧抓好,必将产生深远影响。     

A spiritual response to the challenge of routinization: a dialogue of discourses in a Buddhist-initiated hospice

The hospice vision of providing democratic and humane care of the dying needs to be operationalized in the "real world" of health care bureaucracies. It is at this interface between idealists and the demands of mainstream health care that hospice organizations experience compromise, diversion, and an ongoing threat to their singleness of purpose. This discussion explores this process of routinization through research findings on a hospice organization known as Karuna Hospice Service (KHS). Such findings suggest that, although this hospice inevitably defers to the bureaucratic demands of the system, KHS's spiritual discourse does offer some protection to the formalizing and dehumanizing demands of routinization. Such research findings are provided as a contribution to exploring and documenting the ways in which hospices are negotiating this difficult and important ideological challenge. It is argued that effectively meeting such a challenge is of central importance for the survival of the hospice movement.     

Hospice for aged persons without cancer: the experience of the Hampshire County (MA) hospice

Hospice is an option for patients with terminal illness of all types. The advent of the Medicare hospice benefit has led to a rise in numbers of hospice programs as well as hospice expenditure. Terminal care provided through hospice has a demonstrable cost advantage over conventional terminal care. This difference may dissipate as Medicare hospice expenditure continues to rise. An individual hospice program can define its mission within broad guidelines. A program electing to serve all terminally ill patients regardless of diagnosis can occasionally expect to be cast in the role of long term care-provider when six-month survival is exceeded. Precision in prediction of six-month survival would benefit patients and remove one major obstacle to participation by many primary care physicians. Prognostic techniques are being developed that, thus far, have proven no better than physician judgement in assigning risk or predicting survival. Hospice may provide a setting for clinical research of prognostication. The interdisciplinary team can facilitate hospice care and provide support to individual team members. Care of terminally ill non-cancer patients may require added human resources and alteration of team structure to cope with increased service needs and lengths of stay which may be likely to exceed those of cancer patients.     

Variation in Hospice Experiences by Care Setting for Patients With Dementia

ObjectivesUse of hospice care among patients with dementia has been steadily increasing. Our objectives were to characterize quality of hospice care experiences among decedents who had a primary diagnosis of dementia and their caregivers and investigate differences across settings of hospice care.DesignWe analyzed Consumer Assessment of Healthcare Providers and Systems (CAHPS) Hospice Survey data from caregiver respondents whose family members received hospice care.Setting and ParticipantsData from 96,845 caregiver respondents whose family members had a primary diagnosis of dementia and died in 2017 or 2018 while receiving hospice care in 2829 hospices.MethodsWe calculated quality measure scores overall and stratified by setting, adjusting for mode of survey administration and differences in case mix, and examined variability in hospice-level scores among decedents with dementia.ResultsMean quality measure scores ranged from 69.0 (Getting Hospice Care Training) to 90.9 (Getting Emotional Support). Measure scores varied significantly across settings, with caregivers of decedents who received care in a nursing home (NH), acute care hospital (ACH), or assisted living facility (ALF) consistently reporting poorer quality of care. Hospice-level scores varied substantially, with a wide range between the 10th and 90th percentiles of hospice performance (eg, 25 points).Conclusions and ImplicationsThere are important opportunities to improve hospice care for patients with dementia and their caregivers, particularly with respect to caregiver training, symptom management, and across all dimensions within the NH, ACH, and ALF settings. Variability in care experiences across hospices, as well as long lengths of stay for those with dementia, highlight the importance of informed and timely hospice referral.     

社区开展临终关怀可行性的探讨——192份社区医护人员问卷调查的分析

目的探讨开展社区居家临终关怀的可行性。方法对上海市某区5家社区卫生服务中心192名医护人员对临终关怀的认识进行问卷调查,并对调查结果进行分析讨论。结果95．8％的医护人员认为需要开展临终关怀服务,96．9％的人愿意从事临终关怀工作,57．8％的医护人员了解临终关怀的基本知识。结论社区开展临终关怀具有一定的可行性,社区医护人员的临终关怀知识及沟通技巧需要系统培训。     

Medicaid policies for the hospice care needed by people with Alzheimer's disease

This study surveyed the state Medicaid programs and the state affiliates of the National Hospice Organization to identify Medicaid policies that improve the quality of hospice care provided to Medicaid recipients with Alzheimer's disease (AD). Medicaid programs should expand their use of the home and community-based care waiver programs to include specialized services that allow people with AD to remain at home and to assist family members with their care. Among these services are homemaker services, personal care, a range of respite care, home-delivered meals, and companion services. These waiver programs also allow states to establish more generous eligibility standards for waiver services, enabling more people with AD to quality for waiver coverage than would qualify for the traditional Medicaid program.     

Evaluation of a hospice program: effects on terminally ill patients and their families

Hospice care in the United States has grown rapidly since its introduction here from England in the mid-1970s. Surprisingly little evaluation of services has been made public, particularly with regard not merely to demographics but also the actual effect of hospice caregiving on patients and families. This article describes an attempt to identify the life dimensions that hospice addresses and the levels of discomfort or well-being of patients and families achieved in a hospice home care program. After assessing the changes in medical, psychosocial, and spiritual status for each of a group of hospice home care patients, the trend toward greater wellbeing of patients in the program can be delineated.     

Management strategies for palliative care: promoting quality, growth and opportunity

Over 20 years ago, hospice in the United States evolved to provide end-of-life care for terminally ill patients. However, three major barriers exist, which limit access to hospice care. The first two, cultural and regulatory barriers, are not under the direct control of hospices, although programs can be adapted to minimize their influence. The third, management focus, is controlled by hospice programs and has the greatest influence on access to care and quality of care. Under the influence of the Medicare Hospice Benefit and the peer pressure of managed care, many hospice programs use reimbursability as at least one criterion for determination of coverage of services. The fear is that limited reimbursement will cause some services and therapies to bring the programs to financial ruin. This case study shows the outcome of changing management focus away from restrictive policies about therapies and patient selection toward management of productivity and working capital. Some programs have contributed to growth and stability; the revenue thus produced has supported the new innovations. San Diego Hospice is now growing more than 30 percent per year in spite of competition and a fairly flat death rate in the community. This growth is attributed to finding and meeting unmet needs and making all decisions based on the right thing to do. Every staff member understands and supports the mission. The many programs within the agency contribute to fulfillment of the goal to transform end-of-life care. They are presented here as an example of what can be done with mission-based management.     

Hospice Family Members' Perceptions of and Experiences With End-of-Life Care in the Nursing Home

Objective

Even though more than 25% of Americans die in nursing homes, end-of-life care has consistently been found to be less than adequate in this setting. Even for those residents on hospice, end-of-life care has been found to be problematic. This study had 2 research questions; (1) How do family members of hospice nursing home residents differ in their anxiety, depression, quality of life, social networks, perceptions of pain medication, and health compared with family members of community dwelling hospice patients? (2) What are family members’ perceptions of and experiences with end-of-life care in the nursing home setting?

Methods

This study is a secondary mixed methods analysis of interviews with family members of hospice nursing home residents and a comparative statistical analysis of standard outcome measures between family members of hospice patients in the nursing home and family members of hospice patients residing in the community.

Results

Outcome measures for family members of nursing home residents were compared (n = 176) with family members of community-dwelling hospice patients (n = 267). The family members of nursing home residents reported higher quality of life; however, levels of anxiety, depression, perceptions of pain medicine, and health were similar for hospice family members in the nursing home and in the community. Lending an understanding to the stress for hospice family members of nursing home residents, concerns were found with collaboration between the nursing home and the hospice, nursing home care that did not meet family expectations, communication problems, and resident care concerns including pain management. Some family members reported positive end-of-life care experiences in the nursing home setting.

Conclusion

These interviews identify a multitude of barriers to quality end-of-life care in the nursing home setting, and demonstrate that support for family members is an essential part of quality end-of-life care for residents. This study suggests that nursing homes should embrace the opportunity to demonstrate the value of family participation in the care-planning process.     

Including hospice in Medicare capitation payments: would it save money?

Hospice services received by Medicare risk-based health maintenance organization (HMO) enrollees are paid on a non-capitated basis, creating financial incentives for HMOs to encourage their terminally ill patients to elect hospice. Using Medicare administrative records for 1998, we found that hospice enrollment in the last month of life was significantly higher among HMO enrollees than among beneficiaries in fee-for-service (FFS). However, low mortality rates among HMO enrollees produced similar population-based rates of hospice use in the HMO and FFS sectors. Simulations showed that including hospice care under capitation payments in July 1998 would have produced very small savings for Medicare.     

What does hospice cost?

This paper presents the preliminary results of the economic analyses of the National Hospice Study (NHS), mandated by the United States Congress to investigate the implications of including hospice services in Medicare. Data were collected over an 18-month period from approximately 4,000 patients receiving hospice and conventional terminal care in 25 hospices and 12 conventional care sites. Subsequent analysis may lead to changes in the specific results, and some of the differences may be due to confounding variables that cannot be adjusted for. According to these data, hospital based (HB) hospice costs per day are 44 per cent higher than home care (HC) hospice costs per day ($95 versus $66, respectively). In addition, per patient hospice costs are 24 per cent more for patients enrolled in HB than in HC hospices ($5,890 versus $4,758, respectively). The proportional difference between HB and HC in cost per patient is smaller than the cost per day difference due to the shorter average HB length of stay, 62.3 days compared to 72.5 days for HC. Regarding the cost savings of hospice compared to conventional care, HC hospice costs are lower than conventional care costs regardless of length of stay. However, HB costs seem lower than conventional care costs only for patients with lengths of stay less than two months. Hospice and conventional care patients appear to differ with respect to predisposition toward intensive health care utilization. When this difference is explored more thoroughly in subsequent analyses, the estimated cost differential between hospice and conventional care may change.     

The development of a hospice junior volunteer program

In the United States, volunteer services are mandated by hospice Medicare guidelines; volunteers provide a very valuable service to patients, families, and other members of the interdisciplinary team. A hospice junior volunteer program can engage teens in the care of the dying in our communities. This article describes the development and implementation of a junior volunteer program at St. Thomas Hospice in Hinsdale, Illinois.     

Pharmacy student training in United States hospices.

Hospice is a quickly growing field in health care in the United States. As the pharmacist's role in providing patient care to persons at the end of life increases, considerations should be given for training pharmacy students in this area. The objectives of this study were to examine the frequency of pharmacy student education and training among United States hospice organizations as well as to describe factors of hospice organizations that are associated with pharmacy student training. This is the first study of which we are aware to address the availability of experiential rotations for pharmacy students in hospice programs. A one-page questionnaire was mailed to 3,762 hospice organizations with addresses obtained from the National Hospice and Palliative Care Organization (NHPCO). Following two mailings, eight weeks apart, 907 responses were obtained. Ninety-four (10 percent) hospices trained pharmacy students, 246 (27 percent) trained medical students, 357 (39 percent) trained social work students, and 623 (69 percent) trained nursing students. These results indicate that the experiential training needs of United States pharmacy students are being addressed. However, further study is warranted to describe the various experiences of pharmacy students within the hospice setting.     

The needs of hospice patients and primary caregivers.

It would appear that hospice care providers in the program investigated here are highly accurate in their perceptions of their clients' needs. The program therefore is in an excellent position to accomplish its goals. However, findings also suggest that nurses are most accurate in their perceptions of social, emotional, and physical needs. They don't do as well in estimating the importance of material needs, such as financial and legal concerns. Nurses are also more likely to misperceive the importance of religious and spiritual needs. Hospice programs might consider implementing a structural mechanism to assist nurses in the task of understanding these patient and family concerns. Encouraging nurses to routinely inquire about the need for assistance with these issues is one potential remedy. Specific in-service training to teach nurses how to cue in on material and religious needs may also be beneficial. Another approach would be to further integrate staff persons who have specific training in understanding these types of needs into hospice programs. Attorneys, financial consultants, and clergy may need direct contact with patients and families rather than being called into a specific case only after nurses identify the need. Another implication of these results stems from the finding that nurses' perceptions become more similar to caregivers over time. This is particularly true for the assessment of patients' needs. Previous research shows that a substantial proportion of patients do not enter hospice until a few days prior to their deaths.(ABSTRACT TRUNCATED AT 250 WORDS)