The Growth of the Hospice Movement

This paper traces the history of the hospice movement, its present status and its projection for growth. It looks at hospices in the United States and in Great Britain, particularly examining the kinds of pain associated with terminal illness, and the allevation thereof. It compares the philosophy of hospice with the future of occupational therapy as an integral part of this humane program which provides palliative and supportive care for terminally ill patients and their families.     

A syllabus for fellowship education in palliative medicine

Recent years have seen significant growth in palliative medicine training programs and positions. There are plans to pursue palliative medicine specialty status with the American Board of Medical Specialties and accreditation of fellowship programs with the American College of Graduate Medical Education. A work group of program directors, supported initially by the Cleveland Clinic and then by the American Board of Hospice and Palliative Medicine, has recently published standards for fellowship training. Despite this, fundamental questions remain about defining the field and delineating the knowledge and skills expected following completion of specialty training. In this article, we describe the first fellowship program in palliative medicine (PMP) in the United States, developed and supported by the Cleveland Clinic Foundation. The program has been implemented as part of the Harry R. Horvitz Center for Palliative Medicine, founded in 1987 as the first comprehensive integrated US program in this field. This training program, in existence since 1989, features a traditional rotational structure with an inpatient primary care service, inpatient consult services, and an outpatient consult/hospice service. This article outlines the syllabus developed for this fellowship, given what we believe to be the essential knowledge base for the field of palliative medicine.     

Evaluation of a Chaplain Residency Program and Its Partnership with an In-Patient Palliative Care Team

In 2009 a Consensus Conference of experts in the field of spiritual care and palliative care recommended the inclusion of Board-certified professional chaplains with at least 1,600 hours of clinical pastoral education as members of palliative care teams. This study evaluates a clinical pastoral education residency program’s effectiveness in preparing persons to provide spiritual care for those with serious illness and in increasing the palliative care team members’ understanding of the chaplain as part of the palliative care team. Results showed chaplain residents felt the program prepared them to provide care for those with serious illness. It also showed that chaplain residents and palliative care team members view spirituality as an integral part of palliative care and see the chaplain as the team member to lead that effort. Suggested program improvements include longer palliative care orientation period, more shadowing with palliative care team members, and improved communication between palliative care and the chaplain residents.     

The Harry R. Horvitz Center for Palliative Medicine (1987-1999): development of a novel comprehensive integrated program

The Cleveland Clinic is a large multispecialty group practice. The need for a palliative care program was identified and the program started in 1987. A key concept has been that the existing structure of hospice care as defined by Medicare is insufficient to address the needs of patients with incurable disease. The field of palliative medicine implies physician expertise in several key areas: (1) communication; (2) decision-making; (3) management of complications; (4) symptom control; (5) care of the dying; and (6) psychosocial care. The development of the program (the first in the United States) since 1987 has put in place the following major services, listed consecutively: (1) hospital consultation service; (2) outpatient clinics; (3) acute care inpatient service; (4) hospice and home care service; (5) acute-care palliative medicine inpatient unit; and (6) hospice inpatient facility. Program development has meant that a new program has been introduced approximately every 18 months since the start of the program. This has considerable implications for staffing, the management of change, and competition for scarce resources within a contracting health care budget. The staffing of the program has focused on developing specialized attending physicians using a multidisciplinary approach dedicated to enhancing the role of nursing in the field. The major budgeted areas are (1) the acute-care palliative medicine unit, and (2) the hospice and home care service. Specific commitment has been made to research and education because of the desire to develop an intellectual basis for the practice of palliative medicine. This requires structured activities in both areas with a systematic approach to research and education. The complexity of developing a service should not be underestimated. There has been consistent support for the program by senior leadership within the Cleveland Clinic Foundation, including the cancer center. The major lessons learned during program development have been: (1) to focus on quality of patient care; (2) to commit to academic endeavor in research and education; (3) to secure institutional commitment to program development; (4) to establish a positive, proactive, businesslike approach; (5) to defend budget and personnel, albeit within a difficult time in health care; and (6) to commit to success, i.e., never promise anything on which you do not deliver. The future development of post-acute-care services serving predominantly the chronically ill elderly population suggest an expanded administrative and conceptual role for the future development of palliative medicine to help serve the needs of the aging population in the United States.     

Partners in pediatric palliative care: a program to enhance collaboration between hospital and community palliative care services

The provision of high-quality palliative care services to dying children and their families often requires extensive collaboration between hospital-based and community-based care teams. This article describes the origins and development of the Partners in Pediatric Palliative Care program, which has provided pediatric-specific educational offerings and fostered joint endeavors between a palliative care service located in a tertiary care children's hospital and a wide range of hospice and home care agencies in 5 states. The Partners in Pediatric Palliative Care program is evaluated in terms of the favorable ratings that attendees have given the educational components, the relatively modest direct costs of mounting the regional meetings, and the expanded capacity to provide home-based palliative services to children and families who desire them. The Partners in Pediatric Palliative Care program provides another feasible means for hospitals and community agencies to work together to improve pediatric palliative care.     

Palliative care and hospice: one approach

The establishment of the first department of pain medicine and palliative care in a medical center in the United States is a significant marker in the development and impact of the palliative care movement. The integration of Jacob Perlow Hospice into this department is a milestone in the continued evolution of the hospice movement in the United States, and suggests that an interrelationship and interdependence between palliative care and hospice is one of the characteristics of change for the future.     

A Pilot Study of Oncology Staff Perceptions of Palliative Care and Psycho-oncology Services in Rural and Community Settings in Indiana

Although there has been an increased interest in health care delivery for rural community populations, concerns remain regarding the lack of access to primary health care and specialty services (such as palliative care), particularly in rural areas that are medically underserved (MU). This survey was conducted to examine the perceptions of palliative care services in rural communities and toward identifying perceived barriers that interfere with accessing palliative care services. In conducting the study, personnel from various disciplines throughout the Community Cancer Care (CCC) network (the largest private provider of oncology services in Indiana) completed a survey that assessed their perceptions of the strengths and weaknesses of the available palliative care services in their communities. These responses, which indicate discrepancies in perceptions among staff within sites, suggest problems of integration of palliative care in given locations. Results revealed three particularly problematic areas: accessing pain control, accessing psychological or psychiatric services or both, and overcoming barriers to hospice care. Although no significant differences were found for any variables between MU and adequately medically served (AMS) areas, in general palliative care is limited and unintegrated into oncology care. Confusion among staff at a particular oncology program likely contributes to the haphazard delivery and poor integration of palliative care. Conclusions are tempered by important study limitations but the results suggest the need for programs that improve delivery of palliative care in rural Indiana.     

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.     

Family health and infant palliative care: listening the relatives of technology dependent children

This study discusses the creation of a new child palliative care program based on the Family Health Program, considering the level of care at home and yielding to family requests. Eighteen members of nine families of technology dependent children (TDC) who were hospital patients in the Instituto Fernandes Figueira (IFF) participated on the study. From those four were being assisted by its palliative care program Programa de Assistência Domiciliar Interdisciplinar (PADI); three were inpatients waiting for inclusion in the program, and finally two inpatients already included in PADI. PADI was chosen because it is the only child palliative care program in Brazil. The results are positive in regards to the connection established between the families and the health care team, the reception of the children, the explanation to the family concerning the disease, and the functional dynamics between the PADI and the IFF. As negative points, difficulties arose as a result of the implementation of the program, from its continuity to the worsening or illness of the entire family. In conclusion, although the PADI is the IFF's way of discharging patients, the domiciliary care provided by the Family Health Program, well articulated with the healthcare system, would be ideal for being the adequate assistance for it.     

Providing regular relief; considerations for palliative care in the Netherlands]

Over the last few decades the attention devoted to the palliative aspects of medicine, particularly those in hospital care, has declined due to the emphasis on medical technology. In Anglo-Saxon countries a review of this development resulted in structured palliative care that benefited terminally ill patients with a progressive fatal disease, especially cancer patients. Due to increasing national and international criticism of both the practice of euthanasia (assumed to be too liberal) and the lack of attention devoted to structured palliative care in the Netherlands, the Dutch government decided to improve the structure of palliative care. The government's viewpoint is based on the assumption that good palliative care that includes adequate pain control benefits patient care and might eventually lead to fewer requests for euthanasia. The improvements to palliative care should be realised by means of improvements in the structure, training and knowledge. Six academic medical clusters have been designated as Centres for the Development of Palliative Care (Dutch acronym: COPZ) for a 5-year period. Each COPZ must develop the various aspects needed to improve palliative care within the region it serves and ensure that its activities are carefully coordinated with those in the other centres. Research will focus on measuring the efficacy of palliative care as well as ethical and epidemiological aspects. A government committee will assess the appropriateness of the activities undertaken by each of the centres.     

Palliativversorgung im Blickwinkel gesetzlicher und regulatorischer Vorgaben in Deutschland

In Germany, palliative care has developed rapidly since the establishment of the first palliative care unit in 1983. More improvements in patient-centered care are only possible if legal requirements as well as education of physicians, nurses, and other professionals involved in palliative care are adapted to current needs. This paper provides an overview of legal and regulatory requirements including a critical appreciation of their influence on palliative care in Germany. Only recently has medical education in palliative medicine been implemented as an integral part of medical studies at German universities. Starting in 2014, physicians applying for a license to practice medicine will have to provide a certificate of basic training in this field. The challenge in upcoming years will be the establishment and enhancement of comprehensive, standardized, and quality-controlled education at the universities. Only six universities have established chairs for palliative medicine, and it will be essential to not only establish more chairs but also to involve medical students in the development of the education. Only minimal requirements are specified for education of nurses in palliative care in the legislation. However, standardized and quality-controlled advanced training courses are available. This training is frequently requested as a prerequisite for nurses working in palliative care. Only limited education programs exist for other professional groups that are an important part of the palliative care team. In addition to the development of palliative care for inpatients with an increasing number of palliative care units, hospices, and first chairs of palliative medicine, different forms of ambulant palliative care services have been developed. Changes in the legislation have influenced the situation for home care enormously in the last 5?years, also making it more complex. With the Law for the Consolidation of the Competition in Compulsory Health Insurance ("Gesetz zur St?rkung des Wettbewerbs in der gesetzlichen Krankenversicherung"), a legal claim for palliative home care has been implemented in the fifth book of the social law in 2007. The ambitious goal of full coverage with comprehensive palliative home care has still not been achieved in most locations. However, after initial negotiation difficulties between palliative care providers and health insurance funds, an increasing number of contracts have been made. As a consequence-in addition to more than 240 palliative care units in Germany-more than one hundred palliative care teams have begun work in the field of specialized palliative home care. Legal regulations for the supply of opioids and other medications for the treatment of patients at home have been adapted recently, thus, facilitating fast and comprehensive medical treatment in emergency situations. Overall, the legislation has been adapted significantly, hence, contributing to improvements for patients requiring palliative care. It remains to be seen whether additional adjustments are required in the future.     

Temporal trends in place of death for end‐of‐life patients: Evidence from Toronto,Canada

Understanding the temporal trends in the place of death among patients in receipt of home‐based palliative care can help direct health policies and planning of health resources. This paper aims to assess the temporal trends in place of death and its determinants over the past decade for patients receiving home‐based palliative care. This paper also examines the impact of early referral to home‐based palliative care services on patient's place of death. Survey data collected in a home‐based end‐of‐life care program in Toronto, Canada from 2005 to 2015 were analysed using a multivariate logistic model. The results suggest that the place of death for patients in receipt of home‐based palliative care has changed over time, with more patients dying at home over 2006–2015 when compared to 2005. Also, early referral to home‐based palliative care services may not increase a patient's likelihood of home death. Understanding the temporal shifts of place of death and the associated factors is essential for effective improvements in home‐based palliative care programs and the development of end‐of‐life care policies.     

Palliative care in cancer: elements for debating the guidelines

The aim of this study was to present elements for debating guidelines on palliative care programs for cancer. A literature survey searched various databases (MEDLINE, LILACS, and Cochrane Library), homepages of palliative care organizations, publications by renowned authors in this area, reference textbooks on the subject, relevant articles cited by these books, and the thesis/dissertation database of CAPES (the Brazilian Coordinating Body for Training University Level Personnel). The data were grouped into four thematic categories: symptomatic palliation, organization of services, psychosocial characteristics, and spiritual characteristics. The article then proceeds to discuss cancer as a public health problem and its impact on individuals, the concept of palliative care and its context in health care, program models and their guidelines, death and dying, and care and caregivers. The study concludes by discussing the challenges for the Brazilian National Health System in structuring end-of-life programs as a consequence of the population's aging and increasing cancer incidence.     

An analysis of calls to an out-of-hours palliative care advice line

An advice line was set up by a specialist palliative care hospice to improve the provision of out-of-hours palliative care to primary care teams, i.e. from 17.00 to 09.00 h during the week and at weekends and bank holidays. A senior member of nursing staff or medical staff answered all calls. During the first year of operation, 98 calls were received. The majority of callers were GPs (55%) and community nurses (34%). The advice requested was largely related to management of pain and the use of opiates, e.g. breakthrough dose of opiates and conversion of drugs to syringe drivers. Recommendations from this study include the provision of continuing education on management of terminally ill patients, and improved communication between primary care teams, providers of out-of-hours primary care and specialist palliative care teams.     

Establishing a district palliative care team for children

The children's palliative care team aims to ensure a high standard of care and support for children with life-threatening illnesses and their families. The team works through primary care teams and with hospital staff to ensure consistency and continuity of care and to maintain awareness of good practice and acts as a resource for staff from independent and voluntary agencies. The team consists of a consultant community paediatrician, clinical child psychologist, a dedicated social worker, sick children's trained district nurse, a senior member of staff from the children's ward, a health visitor, a school nurse, and a special school nurse. Other professionals are co-opted to the team as and when considered necessary, for example hospice consultant, pain specialist, dietician, paediatric pharmacist, chaplain. This paper describes how the children's palliative care team was set up and the first 2 years of its functioning.     

Shared care: the barriers encountered by community-based palliative care teams in Ontario, Canada

To meet the complex needs of patients requiring palliative care and to deliver holistic end-of-life care to patients and their families, an interprofessional team approach is recommended. Expert palliative care teams work to improve the quality of life of patients and families through pain and symptom management, and psychosocial spiritual and bereavement support. By establishing shared care models in the community setting, teams support primary healthcare providers such as family physicians and community nurses who often have little exposure to palliative care in their training. As a result, palliative care teams strive to improve not only the end-of-life experience of patients and families, but also the palliative care capacity of primary healthcare providers. The aim of this qualitative study was to explore the views and experiences of community-based palliative care team members and key-informants about the barriers involved using a shared care model to provide care in the community. A thematic analysis approach was used to analyse interviews with five community-based palliative care teams and six key-informants, which took place between December 2010 and March 2011. Using the 3-I framework, this study explores the impacts of Institution-related barriers (i.e. the healthcare system), Interest-related barriers (i.e. motivations of stakeholders) and Idea-related barriers (i.e. values of stakeholders and information/research), on community-based palliative care teams in Ontario, Canada. On the basis of the perspective of team members and key-informants, it is suggested that palliative care teams experience sociopolitical barriers in an effort to establish shared care in the community setting. It is important to examine the barriers encountered by palliative care teams to address how to better develop and sustain them in the community.     

Therapeutic massage: an education program for rural and remote workers in the palliative care field

This paper, drawing upon data from a Rural Health, Support, Education and Training (RHSET) funded project, focuses on the evaluation of a massage education program developed specifically for rural and remote palliative care workers. An 8 week pilot massage education course was run for palliative care workers in the Albury–Wodonga area and, from this course, an instructional video education package on massage has been developed. The program was evaluated by using a questionnaire, journals and focus group interviews. Feedback from participants was incorporated into both the pilot course and final education package, which was consistent with the action research framework. The major findings of the project were that skill development in the therapeutic use of massage was attained and that job satisfaction was indeed achieved by palliative care workers.     

Acupuncture is underutilized in hospice and palliative medicine

Acupuncture is a complementary and alternative medical modality. A considerable body of acupuncture research has accumulated since 1998. Acupuncture has been integrated into palliative care settings in the United Kingdom but is yet to be widely offered in the United States. The literature was searched to identify clinical trials involving acupuncture, palliative care, hospice, chronic obstructive pulmonary disease, bone marrow, and cancer. Twenty-seven randomized controlled clinical trials of acupuncture were found that reported on conditions common to the hospice and palliative care setting, including dyspnea, nausea and vomiting, pain, and xerostomia, and 23 reported statistically significant results favoring acupuncture use for the conditions investigated. Acupuncture is safe and clinically cost-effective for management of common symptoms in palliative care and hospice patients. Acupuncture has potential as adjunctive care in palliative and end-of-life care, and the evidence warrants its inclusion in reimbursed palliative and end-of-life care in the United States.     

What is palliative medicine? motivations and skills

Palliative care began in the UK hospice movement in the late 1960s and has rapidly developed in many countries since. In some, it has become a fully recognized specialty with comprehensive training programs and recognized expertise in areas such as pain and symptom control. It is important to examine the formative influences and characteristic clinical expertise in palliative medicine. This article considers some of the conceptual, practical, and administrative challenges that have been faced in an effort to establish palliative medicine as a discrete field of specialized practice from a US perspective. We also comment on current issues in regard to education and research, and development of comprehensive palliative care programs in the United States.