Refer to: Klutch M: Hospices for terminally ill patients-The California experience. (Information). West J Med 129: 82-84, Jul 1978
Hospices for Terminally Ill Patients The California Experience MURRAY KLUTCH, San Francisco IN AUGUST 1977, following its study of the philosophy and objectives of the hospice movement, the California Medical Association (CMA) Committee on Evolving Trends in Society Affecting Life made four recommendations to the governing council of the statewide medical organization: * That the California Medical Association recognizes that, under appropriate medical supervision, the activities and efforts of qualified hospice programs constitute an appropriate role in the care of terminally ill patients. * That the appropriate CMA committee (for example, Medical Staff Survey) ... develop guidelines and criteria for the accreditation of hospice programs. * That health insurance mechanisms be encouraged to incorporate provisions for hospice care in such accredited programs. * That the [CMA'S] Commission on Communications proceed with its informational program regarding hospices to the public, the profession and the health insurance industry. The hospice concept and development that had attracted the attention of the committee had also been the subject of a resolution introduced at the spring meeting of the CMA House of Delegates. The resolution which requested "CMA to give its endorsement and approval of the ideals of hospice programs and their development by qualified individuals and organizations ... and publicize the hospice concept.. ." happily coincided with the committee's exploration. Faced with what appeared to be an innovative and potentially fast-growing development that Mr. Klutch is Staff Coordinator, CMA Committee on Evolving Trends in Society Affecting Life. Reprint requests to: Murray Klutch, CMA Committee on Evolving Trends in Society Affecting Life, 731 Market Street, San Francisco, CA 94103.
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reflected a humanistic approach to the care of terminally ill patients, the committee had no difficulty in convincing the governing body of the California Medical Association that the hospice concept represented not only a new level of care, but that it also had significant potential for containing the cost of care for a category of patients who were consuming an ever-increasing proporion of medical costs. For the first time in many years an opportunity presented itself in which social, medical and economic issues could be joined; in which patients' families, as well as agencies, organizations and individual persons in each community could combine forces to assist in supporting a group of patients who formerly had lacked the total support they required. The committee's recommendation for the development of criteria and guidelines for the accreditation of hospice programs had as its background the activity of CMA'S Medical Staff Survey which has a major responsibility for the accreditation of hospitals in California and whose activity has been recognized by state and federal agencies for some years. Pending the development of such criteria for hospices, a survey was conducted to identify existing operational hospice programs and those that were in the planning and organizational stages within the state of California. With the assistance of several people active on different levels of hospice organization, approximately 35 persons and organizations were initially identified with hospice programs in different parts of the state. Although there was some evidence that a number of hospitals, home health service programs, visiting nurse associations, hospital oncology and thanatology units, and community organizations had begun to offer various types of counseling services and bereavement care, the survey's concern lay primarily in identifying those programs that offered the major ingredients of hospice care: that is, those programs that identified themselves as hospices and included pain control, symptom control, emotional support, family support, and spiritual and bereavement counseling. (Organizations that serve somewhat the same function as hospices, but do not designate themselves as such, are not included in this survey.) The use of a mail questionnaire in late February resulted in responses from 16 operational hospice programs in 11 California counties (Table 1); most of them state that their programs encompass the six basic services. Several of them
go beyond the six. In addition to the 16 which had been operational for periods ranging from two months to two years at the time of the survey, responses from an additional 1 1 persons, organizations or institutions in eight counties indicate that their programs are either in the planning or organizational stages (Table 2), with at least four of them scheduled to become operational sometime in 1978. More than half of the 16 operational programs started in 1977 (see Table 3). Most of the programs are nonprofit. Of the 16 programs, 12 are nonprofit; four are profit making organizations, with one of the latter in the process of forming a nonprofit foundation for its hospice. Sponsorship of the 16 hospices is shown in Table 4. Virtually all of the operational hospices provide the six basic services; two, however, indicated what appeared to be a lack of spiritual counseling services. Most accept patients of any age from their own areas; two draw patients from their own parent institutions. Of 15 hospices reporting, 12 stated that they admit patients with any terminal illness; three limit their activities almost exclusively to patients with cancer. Of the 16 responding to the question of whether physician referral is required, 11 responded affirmatively. Of the entire group responding to a question about site of services, eight programs provide home care only, two provide inpatient care, and six provide a combination of inpatient and home care. (One hospice, providing home care only, is planning to build an inpatient facility with six beds.) The range of maximum patient load among the 16 hospice programs reporting this information is from 21 to 30; one hospice indicated there
would be no limit. The average length of care reported by 15 programs ranged from less than seven days to more than 36 days. Among those hospices providing information about the cost of their services, one reported a total cost of $800 for an average of 50 days. Table 5 shows the responses of five additional hospices. The Wall Street Journal of March 27, 1978, reported that the New Haven, Connecticut, Hospice found that an average patient was cared for at home for about three months and required 15 visits from physicians and nurses at a total cost TABLE 2.-California Counties with Hospices in Planning or Organizational Stages (As of March 1978)
Contra Costa (2) Fresno Humboldt Los Angeles (3)
San Francisco San Luis Obispo San Mateo Tulare
TABLE 3.-Starting Year of Operational Hospice Programs Year
1974 1975 1976
1 ............ ...... 4 ............ ..
1977. 1978 .
Total .16 TABLE 4.-Sponsorship of Operational Hospice Programs
Community ............... ....... Hospital ........ Home Health Agency ........... Other ...... ......... Prepaid Group Practice Plan (1) Health Professionals (2)
6 4 3 3
TABLE 1.-Operational Hospice Programs in California County
Alameda .......... Hayward Los Angeles ........ Canoga Park Torrance Van Nuys Marin ............. Kentfield Monterey .......... Carmel Orange ............ Laguna Hills San Diego ......... El Cajon San Diego San Diego Santa Barbara Santa Barbara. Santa Clara ........ Palo Alto Solano ............ Vallejo Sonoma ........... Santa Rosa Ventura ........... Oxnard Thousand Oaks
Kaiser Hayward Hospice Pilot Project Hospice at Parkwood; Parkwood Community Hospital Hospital/Home Health Care Agency Continuity of Life Program; National In-Home Health Services Hospice of Marin Hospice of the Monterey Peninsula Hospice Orange County, Inc. Acute Care Hospice Unit, El Cajon Valley Hospital Expanded Patient Care-Hospice Program; College Park Hospital San Diego County Hospice Corporation Hospice of Santa Barbara County, Inc. Midpeninsula Health Service, Inc. Hospice Services of Solano Home Hospice of Sonoma County Mercy Hospice of St. John's Hospital Canejo Hospice, Inc. THE WESTERN JOURNAL OF MEDICINE
INFORMATION TABLE 5.-Cost Per Hospice Day/Visit Hospice
Cost Per Day .
2 .... 3 ... 0.. 0 200 4 .2 110 5 .1
.... .... ....
Average Number of Days
46 14 20 7 13
of about $450.1 An article by Longo and Darr in Hospital Progress2 reports a cost of $100 to $110 per day of inpatient care at the New Haven Hospice. It is apparent that the lack of precise information is due, in part, to lack of uniform accounting procedures or the insufficient experience of recently-formed hospices. Information from 14 programs showed that approximately 1,200 terminally ill patients had been served by the hospice programs in California by the end of February 1978. The median age of these patients was 63. The total number of beds provided for terminally ill patients by four hospice programs with inpatient facilities was 52. Only one of the 15 programs that responded to the survey question stated that it has not conducted a public information program about hospices. Of 15 programs responding, eight have Medical Advisory Committees, two have what they call either professional or health care advisory committees and five have neither. Of 16 which responded, ten have boards of directors (two of those are the boards of their hospitals), and five have none. Of the 15 hospices providing information about their staff, eight have medical directors, although most of the others have physicians who serve as part-time volunteer counselors to their programs. The foregoing provides an overview of the status and some characteristics of the hospice
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movement in California. Judging from the publicity such programs have -received, there would appear to be little doubt that hospices will find a ready place and occupy their own niche within the health care system; rarely has such an activity taken place which captured the interest and involvement of so many segments of the community. If any ingredient appears to be lacking at this early stage, it is that of attracting and involving minority and low income people. This represents a current weakness to the full-scale development of a concept and program which has the potential of revolutionizing an important aspect of the caring function. A problem of deep concern to the hospice movement is that of securing reimbursement for the services they provide. At the time of this survey, grants from public and private sources were supporting several of them. Contributions in kind and in money from community resources were enabling most to function. A handful were managing to cover costs of specific services by reimbursement from certain insurance programs, as well as from Medicare and Medicaid (Medi-
Cal). There can be no doubt that with the eventual institution of accreditation procedures, aided by changes in legislation and insurance programs, more formal methods of reimbursement will enable hospices to become more self-sustaining. Their greatest strength lies in the concept they promote, in the appeal they will have to the public and, above all, in the humanistic approaches they employ in the care of terminally ill patients. REFERENCES 1. Stoddard S: The Hospice Movement. New York, Stein & Day, 1978, p 126 2. Longo DR, Darr K: Hospital care for the terminally ill: A model program. Hospital Progress 59:62-65, 84, Mar 1978