The business of palliative medicine--Part 3: The development of a palliative medicine program in an academic medical center

Palliative medicine is the total continuing care of patients with cancer. Most resources for cancer care focus on curative attempts while often ignoring the symptoms created by the disease and its treatment. Attempts at curative treatment of the malignancy must be coupled with pain and symptom relief psychosocial and spiritual care, and support for the patient and family extending from the time of diagnosis through the bereavement period. To accomplish this important goal, we must establish comprehensive palliative medicine programs in cancer centers throughout the world. These programs must include education, research, and patient care and must work through an interdisciplinary team. The Cleveland Clinic Foundation palliative medicine program (PMP) is composed of a primary inpatient service, consult service, outpatient clinic, hospice homecare, and cancer homecare services. In this article, we describe the structure and development of the program and suggest future avenues for growth.     

‘I am closer to this place’—Space,place and notions of home in lived experiences of hospice day care

In the United Kingdom hospice day care services are the fastest growing yet least researched of the palliative care services. Using photo-elicitation interviews with 11 day care patients attending a specialist hospice day care setting we explored their experiences of the hospice as a place and how these changed over time.Informed by concepts from existential and humanistic geography we propose three existential modes of being – Drifting, Sheltering and Venturing – which characterize the patients’ lived experiences of the hospice. Our phenomenological analysis shows that the hospice is (re)constructed purposefully to achieve a sense of ‘home’ and ‘homelikeness’, creating an important therapeutic landscape for patients.     

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.     

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.     

Preliminary Report of a Palliative Care and Case Management Project in an Emergency Department for Chronically Ill Elderly Patients

The Palliative Care Service at Montefiore Medical Center (MMC) established a pilot project in the emergency department (ED) to identify chronically ill older adults in need of palliative care, homecare, and hospice services and to link such patients with these services. Two advance practice nurses conducted consultations on elderly patients who were found to have one or more “palliative care triggers” on initial screening. A standardized medical record abstraction form was developed. Service utilization and survival were evaluated using the Clinical Information Systems of MMC. Activity of daily living items were developed from the Outcome and Assessment Information Set and the Palliative Care Performance Scale (PPS). Risk factors for hospitalization and use of the ED were taken from the SIGNET model risk screening tool. Physical and emotional symptoms were evaluated using the 28-item Memorial Symptom Assessment Scale short form. Preliminary outcomes and characteristics are presented for 291 patients who completed the intake needs assessment questionnaire. Almost one third (30.9%) of the study cohort died during the project period. Most of the deaths occurred beyond the medical center (7.7% died in the medical center and 23.3% outside the medical center). Thirty percent of patients who died were enrolled on a hospice. Survival time was predicted by the presence of dyspnea, clinician prediction of death on the current hospitalization, psychosocial distress, and PPS scores. Chronically ill patients visiting an urban community ED had complex medical and psychosocial problems with limited support systems and homecare services. Significant proportions of such patients can be expected to have limited likelihood of survival. The presence of palliative homecare and hospice outreach services in the ED in urban community hospitals may provide an effective strategy for linkage of elderly patients at the end of life with otherwise underutilized services. O’ Mahony, Simpson, Huvane, McHugh, Hutcheson, Karakas, and Higgins are with the Palliative Care Service, Department of Family and Social Medicine, Montefiore Medical Center, Albert Einstein College of Medicine, Bronx, NY, USA; Blank and Selwyn are with the Department of Family and Social Medicine, Montefiore Medical Center, Albert Einstein College of Medicine, New York, NY, USA; Persaud is with the Memorial Sloan Kettering Cancer Center, New York, NY, USA; McAllen and Davitt are with the Emergency Department, Montefiore Medical Center, Albert Einstein College of Medicine, New York, NY, USA.     

Cost savings in hospice: final results of the National Hospice Study.

Medicare inpatient and home care costs over the last year of life of terminal cancer patients served in two types of hospices and in conventional care (CC) were compared as a part of the National Hospice Study (NHS). Both home care (HC) and hospital-based (HB) hospice patients had lower costs in the last month of life than did CC patients. HC patients substituted home care for inpatient care, yielding cost savings for lengths of hospice stay of up to 1 year. Although HB patients added home care to relatively high levels of inpatient care, their ancillary costs per inpatient day were significantly lower than those of CC patients. Thus, HB costs over the last year of life were also somewhat less than those of CC. The size of the savings associated with hospice care is sensitive to the type of hospice and the length of stay distribution of patients served; patients served longer have significantly higher costs in the last year of life.     

Collaborative partnerships: managing increased healthcare demand without increasing overall system capacity

Collaborative partnerships can help improve integration and quality in local healthcare systems. We describe an innovative approach that was implemented following the formation of a tri-provider partnership between homecare and two acute care hospitals. The approach questioned the prevailing thought that the home is always the most appropriate and least costly location to provide services to clients traditionally served by homecare. The goal was to improve the delivery of healthcare by better integrating patient characteristics with services provided by homecare, hospitals and family physicians. The result was the implementation of a pilot project in which both homecare clients and non-urgent hospital patients could be served in a hospital-based ambulatory nursing care clinic.     

Characterizing hospice discharge patterns in a nationally representative sample of the elderly, 1993-2000

The aim of this study is to identify the prevalence and correlates of individuals discharged alive from hospice in the Medicare program to determine whether the current hospice benefit matches the needs of dying patients. Using a nationally representative sample of age-eligible Medicare beneficiaries who died from 1993 to 2000, the use of hospice and other Medicare-financed care was analyzed during the last year of life for different groups of hospice users. It was found that 84.5% (n = 1029) of hospice users initiate and use it continuously until death; 15.5% of hospice users are discharged alive, with some later reinitiating hospice. The main difference between continuous hospice users and those discharged alive is the time survived after initial hospice use (those discharged alive live longer). After controlling for survival time, costs per day survived are similar for all groups. This study suggests several motivations for being discharged alive that are worthy of more research.     

Homecare and the informal information grapevine: implications for the electronic record in social care

This article explores informal information exchange in social care, and implications for formal monitoring with an electronic social care record (ESCR). Six homecare settings were studied over 14 months between 2001 and 2002. Participant observation methods were used with the recipients of homecare (n = 7) and in-depth interviews plus participant observation with formal care workers (n = 31). Allied healthcare professionals (n = 9) and homecare managers (n = 5) were interviewed, as were two family members. The findings show that assumptions about monitoring of care processes may be faulty, and that trust and negotiation are important aspects of the care delivery. Modelling of the business processes indicates that roles and responsibilities for managing a care plan may shift, with the consequence that information can be omitted from a formal record if care workers selectively withhold information from care managers. The article concludes that any formal record needs to allow for the extensive negotiation involved in needs assessment and monitoring of care plans.     

医务人员临终关怀知识、态度现状调查研究——以贵州省为例

目的 了解医务人员对临终关怀的认识和态度现状，分析其影响因素并提出建议，为培养临终关怀专业服务队伍，制定临终关怀干预政策提供理论依据。方法 采用分层随机抽样法，抽取贵州省1320名医务人员并开展问卷调查，使用SPSS 17.0软件分析数据。结果 医务人员临终关怀知识得分（7.63±2.273），临终关怀态度得分（4.50±1.512）。性别（t=-2.536，P=0.011）、学历（t=3.163，P=0.002)和职称（t=3.867，P<0.001）对临终关怀知识得分影响有统计学意义；学历（t=2.249，P=0.025)和职称（t=2.465，P=0.014）对临终关怀态度影响有统计学意义。临终关怀知识和临终关怀态度呈正相关（r=0.544，P<0.001）。结论 医务人员缺乏专业临终关怀知识，临终关怀态度不积极。建议政府加大对临终关怀的扶持力度，规范医务人员在校期间和继续教育阶段的临终关怀教育，同时鼓励高学历、高职称医务人员加入临终关怀服务队伍。     

深圳市居民安宁疗护接受意愿及其影响因素研究

目的 调查深圳居民接受安宁疗护及同意家人接受安宁疗护的意愿程度,了解居民对安宁疗护目的及推广阻力的认知情况,为推进安宁疗护工作提供参考。方法 采用在线问卷对深圳居民进行横断面调查,无序多分类logistic回归模型分析深圳居民接受安宁疗护及同意家人接受安宁疗护的影响因素。结果 共回收问卷5 007份,剔除无效问卷后,得到有效问卷4 772份,有效率为95.3%。深圳居民对安宁疗护的个人接受意愿和同意家人接受意愿分别为70.2%和66.2%。七成居民赞同安宁疗护的目的为减轻痛苦或缓解压力,认为安宁疗护推广的首要阻力是费用过高或医保不覆盖、以及宣传和推广不到位。平均月收入较低的居民,个人接受安宁疗护（AOR = 0.83, 95%CI: 0.69～0.99）和同意家人接受安宁疗护（AOR = 0.81, 95%CI: 0.69～0.95）的意愿均更低;有过家人朋友接受安宁疗护经历的居民,个人接受安宁疗护（AOR = 1.47, 95%CI: 1.24～1.75）和同意家人接受安宁疗护（AOR = 1.45, 95%CI: 1.23～1.71）的意愿均更高。此外,影响个人接受安宁疗护意愿的危险因素还包括受教育程度较低（AOR = 0.66, 95%CI: 0.47～0.92）,保护因素还包括安宁疗护服务意向地点为家庭（AOR = 1.28, 95%CI: 1.05～1.56）。结论 深圳居民对安宁疗护的个人和家庭接受意愿均较高,但受到月收入、教育程度、亲身经历和服务意向地点等因素的影响。开展宣传推广和生命教育活动,组织安宁疗护志愿服务,完善安宁疗护收费和居家服务体系,将有助于提升城市居民对安宁疗护的接纳意愿。     

A Review of Barriers to Utilization of the Medicare Hospice Benefits in Urban Populations and Strategies for Enhanced Access

Disparities in access to health care extend to end-of-life care. Lack of access to hospice mirrors lack of access to health maintenance and primary care. Patients who are served by hospice nationally are disproportionately white and likely to reside in economically stable communities. In many urban low-income communities, less than 5% of decedents receive hospice care in the last 6 months of life. This review focuses on barriers to palliative care and hospice in urban, predominantly low-income communities, including cultural and reimbursement factors and the paucity of hospice providers, outreach projects, and in-patient hospice beds in urban communities. This review will also address some strategies that are being implemented by hospices locally and nationally to overcome demographic barriers to hospice care.     

Hospice values, access to services, and the Medicare hospice benefit.

The Medicare benefit has been an important force in shaping the American hospice movement during the 1980's. Hospice reimbursement under Medicare added legitimacy to the movement, increased access to hospice care for some Medicare beneficiaries, and provided financial support to Medicare certified hospice programs. But the increased access for some may come at the cost of decreased access for others, and the price of reimbursement may be the erosion of hospice as a unique form of terminal care in this country. It is up to hospice professionals to balance the fiscal realities of providing hospice care without losing sight of the values and philosophies that have made hospice a "special kind of care."     

Information needs of family caregivers of terminal cancer patients in Taiwan

Previous studies have indicated that when family caregivers are provided with enough of the right information their coping strategies in caring for terminal cancer patients are enhanced. In Taiwan, family caregivers are highly involved in their ill family member's symptom management and must stay at the bedside to share the nursing and caregiving tasks in the palliative care unit. The cross-sectional survey described here used a structured questionnaire to identify six domains of information needed among family caregivers who stay in the palliative care units to prepare them to provide hospice homecare after discharge. The six domains for which family members needed specific information included the basic tenets of caregiving, the disease, the social welfare of the patient, psychosocial issues, palliative care, and spirituality/religion. This study indicated that information about the disease itself was of greatest importance, with the least importance attached to spiritual and religious information. Age, gender, educational level, and socioeconomic status (SES) of family caregivers were factors in how they viewed the importance of each domain. Situation-related variables, such as the extent of each caregiver's role in decision making, duration of the patient's disease, and the treatment the patient was undergoing were also related to how caregivers valued each type of information. Study results indicated that the education of caregivers in the palliative care unit should be individualized based on each patient's condition and each family's characteristics.     

放疗患者临终关怀实践中的问题探讨

通过对实际案例的分析讨论,从放射治疗的终末期病人需要进行临终关怀、放射治疗理念与临终关怀理念的冲突、为病人的临终关怀做准备方面进行了分析,提出借鉴国外经验在综合医院开展临终关怀的设想。     

What length of hospice use maximizes reduction in medical expenditures near death in the US Medicare program?

Hospices have been expected to reduce health expenditures since their addition to the US Medicare benefit package in the early-1980s, but the literature on their ability to do so is mixed. The contradictory findings noted in previous studies may be due to selection bias and the period of cost comparison used. Accounting for these, this study focuses on the length of hospice use that maximizes reductions in medical expenditures near death. We used a retrospective, case/control study of Medicare decedents (1993-2003, National Long Term Care Survey screening sample) to compare 1819 hospice decedents, with 3638 controls matched via their predicted likelihood of dying while using a hospice. Variables used to create matches were demographic, primary medical condition, cost of Medicare financed care prior to the last year of life, nursing home residence and Medicaid eligibility. Hospice use reduced Medicare program expenditures during the last year of life by an average of $2309 per hospice user; expenditures after initiation of hospice were $7318 for hospice users compared to $9627 for controls (P<0.001). On average, hospice use reduced Medicare expenditures during all but 2 of hospice users' last 72 days of life; about $10 on the 72nd day prior to death, with savings increasing to more than $750 on the day of death. Maximum cumulative expenditure reductions differed by primary condition. The maximum reduction in Medicare expenditures per user was about $7000, which occurred when a decedent had a primary condition of cancer and used a hospice for their last 58-103 days of life. For other primary conditions, the maximum savings of around $3500 occurred when a hospice was used for the last 50-108 days of life. Given the length of hospice use observed in the Medicare program, increasing the length of hospice use for 7 in 10 Medicare hospice users would increase savings.     

Cultural competency and diversity among hospice palliative care volunteers

This case study examines the current state of cultural competence in hospice and palliative care in the Greater Toronto Area (GTA). Because of changing demographic trends and ethnic minorities underutilizing hospice palliative care services, this research examined the current state of culturally competent care in a hospice setting, and the challenges to providing culturally competent care in a hospice in the GTA. A case study was conducted with a hospice and included in-depth interviews with 14 hospice volunteers. The findings reveal that volunteers encountered cultural clashes when their level of cultural competency was weak. Second, volunteers revealed there was a lack of adequate cultural competency training with their hospice, and finally, there was a lack of ethnic, cultural, and linguistic diversity among the hospice volunteers.