Effectively training the hospice and palliative medicine physician workforce for improved end-of-life health care in the United States

The widening gap between the demand for palliative care services and the supply of trained palliative care professionals has resulted in considerable end-of-life distress for patients. Without formal training in palliative medicine and end-of-life symptom management, physicians in the United States are less equipped to competently address seriously ill and dying patients' medical, emotional, and spiritual needs. Recent attempts within graduate medical education training deliberately seek to prepare a critical mass of physicians as the new hospice and palliative medicine workforce in the United States. In addition, healthcare reform proposals may re-define the National Health Service Corps (NHSC) post-graduate training over the next five years and the Hospice Medicare Benefit altogether. Healthcare policy options include steady changes at multiple levels of medical training -namely, medical school curriculum mandates, requiring all graduate physician residency training to foster patient-centered communication skills and discussions about advanced directives, and instituting palliative medicine proficiency Continuing Medical Education (CME) requirements for all states' medical licensing boards. Attracting qualified physicians to serve patients at the end of life, innovative medical school loan repayment programs and scholarships will also foster excellence in the field of hospice and palliative medicine. Correcting our current paucity of formal training in palliative medicine better utilizes hospice and restores patients' dignity at the end of life.     

A comparison of hospice and conventional care

Interviews with relatives and others who knew a group of people dying of cancer in England are reported. The bulk of the paper compares 45 such patients who received hospice care with 126 who received conventional care. The sampling procedure showed that 2.9% of people aged 15 or over at death died in a hospice, and 6.9% received some form of hospice service. The hospice patients differed in several ways from other cancer patients. They had fewer conditions other than cancer recorded on the death certificate, were believed to be more religious and were more likely to suffer from a variety of symptoms and restrictions, including pain. Hospice patients were reported more likely to know that they were dying and respondents' levels of satisfaction with hospice home nursing and in-patient hospice care were significantly higher than for other forms of care. Hospice home nurses were found to have adopted a more advisory approach to nursing care than other home nurses who focussed more on practical care. When final admissions were considered, in-patient hospice care involved fewer medical interventions and, in the last year of life, those receiving hospice services were less likely to have an operation. There were few differences between the two groups in what happened at the time of death, although for in-patient deaths, respondents judged the staff of hospices to be more understanding. The relatives of hospice patients were more likely to be visited by a nurse at home after the death. Few differences in bereavement reaction were found, but those that were suggested that respondents for the hospice group were adjusting better.(ABSTRACT TRUNCATED AT 250 WORDS)     

The Ohio Hospice Bereavement Study: meeting NHPCO standards

Little attention has been paid to documenting the quality and impact of hospice bereavement programs. While quality of life, quality of dying, and quality of end-of-life measures are common indicators of effective clinical service, they are not adequate gauges of quality from a bereavement perspective. The National Hospice and Palliative Care Organization (NHPCO) published standards for hospice and palliative care programs that included a section on bereavement care. Little evaluative work has been done to discover whether hospice programs nationwide are compliant with these standards. The purpose of this study was to evaluate whether hospice programs (n = 32) in the state of Ohio were meeting the NHPCO bereavement standards. Findings indicated that the participating hospice programs were 83 percent compliant at least some of the time.     

A better approach to care of the dying. Catholic healthcare and the Catholic community can present an alternative to physician-assisted suicide

To combat physician-assisted suicide, Catholic healthcare and the Catholic community cannot solely focus on mounting campaigns and formulating policies. They must also demonstrate an alternative way to approach death and care of the dying, taking a leadership role in improving end-of-life care. To accomplish this, Catholic healthcare must foster a culture that recognizes death as the inevitable outcome of human life and makes care for the dying as important as care for those who may get well. The ministry must acknowledge the limits of human life, human abilities, human ingenuity, and medical technology; and respect decisions to forgo life-sustaining therapies. In addition, physicians must address advance directives with patients before hospitalization and must be willing to offer hospice care as an option to dying patients and their families. More effective pain management must be devised. Catholic facilities must develop palliative care policies and commit to ongoing education to provide such care. It is essential that they pay attention to the environment in which patients die; identify the physical, psychosocial, and spiritual needs of family members; and use prayer and rituals in meaningful ways. With a clear focus on improving end-of-life care, Catholic healthcare--in partnership with other denominations--can eliminate some of the factors that can make physician-assisted suicide seem appealing to suffering people.     

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.     

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.     

Terminal care preferences: hospice placement and severity of disease

National Hospice Study data for 1981-82 were used to predict the location of care for terminal cancer patients. Sites of care were conventional care in hospitals, hospital-based hospice care, and hospice care in the home. Subjects were terminal cancer patients with a prognosis of less than 6 months of life who were attended by a primary concerned person. There were 1,732 patients 18-99 years old-293 conventional care, 612 hospital-based hospice care, and 827 hospice home care patients. Data sources were the patient, the primary concerned person, the family, and the medical record. Data were obtained at initial interview for the study, 1-week followup, reassessment every 2 weeks, and bereavement interviews. Information was grouped in the following categories: patient functional status, patient psychological outlook, symptomatology, medical condition, and characteristics of the primary concerned person and family. Conclusions were reached by univariate and multivariate analysis. First, a progression of functional disability was found to exist among care sites, from hospice home care for the least disabled to hospital-based hospice care to conventional care for patients with the greatest disabilities. The location of care was best explained by the patient's functional capacity. Second, the location of care was found to be poorly explained by extent of organ involvement or specific symptoms. Third, the primary concerned persons of patients under hospice home care experienced more stress but reacted no differently when compared with primary concerned persons at other care sites. Fourth, patients under hospice home care survived the longest and reported greater family closeness than other care groups.     

Care of the dying: a Catholic perspective. Part III: Clinical context--good palliative care eases the dying process. Catholic Health Association

In the midst of a push for legalized euthanasia and assisted suicide in the United States, the Catholic healing tradition should provide good palliative care and support for dying patients. Catholic healthcare institutions can have a counterinfluence on the euthanasia movement if they strive to relieve all forms of pain-physical, psychological, social, and spiritual. Care givers must adapt their pain management methods to diverse groups of patients and their needs. Comprehensive pain management includes not only specialized clinical programs to control physical pain, but also counseling and human support to minimize psychological pain, community support groups to counter social pain, and pastoral care resources to address spiritual pain. Truthful communication lies at the heart of the therapeutic relationship. Healthcare institutions can likewise organize themselves internally to offer optimal support programs for those who are dying, their families, and their care givers. Necessary ingredients for a comprehensive approach include integrated treatment plans, hospitable environments, policies on advance directives and collaborative decision making, ethics committees that are well versed in end-of-life issues, education programs, and a hospice philosophy of care.     

Hospice day care

Hospice day care is a cost-effective way to expand the range of services available to hospice patients and families. Additionally, day care can increase continuity of care between inpatient and homecare settings, and ease the burden of responsibility on the homecare component of hospice.     

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.     

Support in a time of need. The team approach at Mercy Medical Hospice addresses medical, emotional, and spiritual needs

Mercy Medical Hospice, Daphne, AL, uses an interdisciplinary team approach, which includes medical, nursing, social work, pastoral care, pharmacy, therapies, volunteer, and bereavement services. Mercy Medical has two home care offices and offers inpatient respite care for short periods, which is helpful for those who have an inadequate care giver system or need time to work out a better alternative to care in the home. An assessment of medical and nursing care needs, mental and emotional state, and psychological and spiritual needs is the first step after patients enter hospice. The entire team develops a care plan for the patient and family. Among the issues they address are education about the disease process, medication for pain control and symptom management, and how the patient and family cope with the patient's imminent death. Working with the dying and their families can be stressful for staff members, and they offer each other a lot of support. Working in hospice requires good stress management techniques, but staff feel that it is a calling that enriches their lives.     

Extending the mission to the work site. A Denver provider joins a local television station in sponsoring health fairs

In 1991 KUSA Channel 9Health Fair Foundation asked Provenant Health Partners--a Catholic multi-institutional healthcare system in the Denver area--to become a sponsor of its annual fairs. Provenant viewed this invitation as an excellent opportunity to extend its mission and increase its focus on health and community service. Since January 1992, Provenant and 9Health Fair have conducted more than 45 fairs at 28 different work sites. At many sites, more than one employer participates, so approximately 90 companies have actually been served. Health fair volunteers and healthcare professionals check attendees' weight, blood pressure, lung function, body fat composition, foot conditions, vision, and hearing. Attendees may be screened for peripheral vascular disease, glaucoma, and a variety of cancers. In addition, a comprehensive blood chemistry test and a prostate-specific antigen blood test are offered for a small fee. For conditions requiring further evaluation, attendees are referred for medical follow-up. The fairs have been successful in identifying pathological conditions, enabling many people to seek early treatment. The early detection has resulted in significant healthcare cost savings. Health fairs have also promoted higher familiarity and favorability ratings of Provenant Health Partners and constituent institutions. Perhaps more important, the health fairs have enabled hundreds of Provenant employees and staff physicians to devote thousands of hours volunteering to promote better health in the community.     

A community-wide volunteer-intensive hospice program.

Hospice of Frederick County has developed a volunteer-intensive community-model hospice program that is in many ways different from hospice programs that see themselves as a new specialty within the health care system. The intention of the program is to keep the patient and family in control of decisions and to work closely with existing health care providers selected by the family. Hospice of Frederick County believes hospice care is far more than professional health care. "The Board of Directors believes that hospice is a community concern. The compassion and caring which characterizes hospice belongs in the churches, neighborhoods, schools, workplace, service clubs...in all areas of community life. Hospice volunteers are people from the community who care so much that they are willing to receive special training and supervision to be friends to the dying, their families and their loved ones".     

Changing the way we care for the dying

Systemic healthcare reform provides an opportunity to make care of the dying more humane, less technology based. Dying persons should neither be ignored when technologies prove futile nor be handed over too hastily to professional and institutional care. Perhaps dying should be reclaimed and, where possible, taken back into the home, family, and community. Caring appropriately for dying persons is made difficult today by a number of factors. Americans' death-denying attitudes drive much of what healthcare professionals do in both acute and long-term care settings. Frequently, the emphasis is on curative and rescue interventions to the neglect of all else. Finally, the U.S. family has become increasingly unable or unwilling to care for a dying family member at home. The potential for significant reform of the healthcare system may change the way care is rendered to dying persons. Catholic healthcare providers should be leaders in reshaping the way dying persons are cared for. First, ethics committees should formulate, promulgate, and implement policies delineating the appropriate use of life-sustaining interventions. Second, long-term care givers need to overcome the troubling tendency to transfer dying persons to acute care facilities when death is imminent. Third, hospice services should be available and their use encouraged. Finally, representatives from Catholic healthcare should work with parishes to encourage the faith community to share in the responsibility of providing home care for dying persons.     

Danger signs. Coalition points to causes and consequences of inadequate care of the dying

Dying patients and their families repeatedly express their need for supports based on compassion and caring, yet healthcare efforts focus on often ineffective technological interventions and procedures. Professional healthcare schools provide little or no formal training in pain and palliative symptom management or in the multidimensional approach to care of the dying. And the pace of change in healthcare leaves little time for communication between the patient, family, and caring team. Physician denial of death and dying has a significant impact on clinical decision making and misleads healthcare administrators about priorities. Even when clinicians want to practice holistic supportive care, they are often unable to because of competing productivity demands and lack of reimbursement. Inappropriate therapies may be initiated to justify continued care in acute and skilled nursing environments. Because healthcare professionals may not inform families about what can be done in the way of supportive care, they may choose to ?do everything,? which often means using inappropriate treatments. Supportive Care of the Dying: A Coalition for Compassionate Care is a unique collaborative effort to help change the culture of dying in healthcare and to help Catholic and other organizations offer appropriate care based on respect for the sanctity of life, regard for human dignity, and a commitment to stewardship. The coalition intends to develop a comprehensive supportive care model built on Catholic values and tradition.     

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."     

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.     

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.     

Hospice and palliative care: an educational intervention for healthcare professionals in a rural community

The purpose of the study was to increase the awareness and availability of hospice care in rural communities. In Taos, New Mexico, a community of about 30,000 people, we developed an educational intervention that introduced the topic of end-of-life care and hospice to their healthcare professionals. We targeted nurses, physicians, and other related healthcare professionals. The nurses and allied health professionals received a half-day seminar. The physicians attended a grand round about hospice and palliative care lead by the local hospice medical director. This individual was an important member of the local medical staff and was certified in hospice and palliative medicine. After the intervention, we were able to demonstrate an increase in the hospice annual census by 85 percent (p < 0.001). Average length of stay was not altered (27.3 percent enrolled for six days or less preintervention, 29.5 percent enrolled for six days or less postintervention; p = 0.97). Similarly, the number of patients admitted with a non-cancer diagnosis was not affected (54.6 percent preintervention, 44.3 percent postintervention; p = 0.34). We concluded that the educational intervention significantly increased the number of patients referred for hospice care. However, it did not affect the length of stay or increase enrollment for people with a non-cancer diagnosis. The educational intervention was inexpensive, locally run, and very effective as demonstrated by the increase in hospice referrals. Exporting the model to other rural sites appears to be feasible.     

The benefits and difficulties of academic collaboration

People working in academia and in hospice organizations can help each other succeed while serving the needs of the people in hospice care. This is especially important in times of tight budgets for all concerned. Hospice organizations would benefit from educating themselves about research and participating as partners in research activities. Collaborating researchers must be willing to discuss their research with members of hospice organizations and explain how it is to be structured, conducted, and how it can improve services. Researchers can make scientific investigation and its findings more user-friendly and understandable. The hospice organization can set up forums that promote dialogue between hospice professionals and researchers at meetings, conferences, and symposia that will benefit the academic group, hospice organization, and, ultimately, people in hospice care.