The Hospice

Development and Administration

Glen Davidson

• Publisher: Taylor & Francis
• Year: 2014
• ISBN:
  9781317770657
• Edition: 2
• Topic: Psychology
• Subtopic: Mental Health in Psychology
• Index: Psychology

Explains how to start a hospice, discusses issues concerning their Administration, And Considers Staff Stress, Emotional Support For mourners, ethical problems, and legal concerns.

Chapter 1

Starting a Community Hospice

Paul T. Werner

The experience of Bay de Noc Hospice, Inc., in Escanaba, Michigan, a town of about 15,000 people in Michigan’s Upper Peninsula, is the basis of this chapter. Nearly 40,000 inhabitants, living in an area of about 1300 square miles, are served by Escanaba facilities, including a private 127-bed hospital and community mental health center. The nearest tertiary care center with full oncology and radiation therapy services is about seventy miles north. A family practice teaching program of Michigan State University is located in the community. Approximately thirty-five physicians are divided equally between primary care and speciality practices. The people are primarily of northern European background and are employed in forestry, manufacturing, tourist and service industries. Sixty percent of the inhabitants are Roman Catholics, with many Protestant denominations also represented. Of the approximately 370 deaths which occur in the county each year, about 60 result from illnesses likely to involve a terminal phase–such as cancer and advanced organ failure.

The hospice in Escanaba is a non-profit organization offering free services. Its all-volunteer staff is paid only expenses. There is no inpatient facility; rather, a single nurse is assigned to each family unit and attempts to coordinate care regardless of the setting. The nurse provides daily contact and serves as the liaison for other services from volunteers, pastoral counselors, physicians, and social services. Families’ own physicians and pastoral care providers, if present, are incorporated as part of the care teams. The majority of care and deaths occurs in the home setting. Bereavement care for surviving family members is provided for up to eighteen months post-mortem. All services, coordinated through assigned nurses, are provided wherever patients are housed–home, hospital, or nusing home. Planning for the Bay de Noc Hospice began in spring of 1978, and patient care began in October of 1979. Community support, both in terms of new referrals and financial aid, has been outstanding, and the feedback of those served extremely gratifying.

In the last several years this model proved useful to facilitate the development of the Hospice of Central Georgia in Macon. This program is operating successfully in its first years of service.

THE INTRODUCTORY PHASE

The idea for a hospice often is initiated through a single individual or small group. One of the first essential steps is to assemble a core group of other persons to get the program started. Obviously this initial group should include individuals who have a real interest in the hospice concepts or the ability to contribute necessary skills. Physicians who are partial to holistic and family care are helpful. Nurses, especially those who do home care nursing (such as the visiting nurses or county health nurses), immediately understand the special needs of a hospice. Funeral directors, from their experience with grieving families, are aware that hospice services are valuable to their clients and often provide enthusiastic support. Individuals who have had experience caring for dying relatives may be receptive to the idea. Future program needs should be considered during the selection of supporters for the introductory phase. Legal advisors, people to supervise the volunteer education program and others to provide group process skills prove very useful later when the hospice team itself is formed. The introductory phase group has several important tasks to complete. The most immediate task is to become familiar with hospice literature, principles and models of hospice organization. It is important for the group to convene on a regular basis–at least weekly–to discuss ideas and to plan for the next phase. National, state and local hospice organizations can be contacted for materials and advice.*

Public awareness in the community is important at this phase. Individuals active in civic affairs, local politicians, ministers, physicians, and community assistance agencies like the American Cancer Society, social services offices, hospitals, nursing homes and mental health agencies are helpful contacts at this crucial phase. Hospice plans should be relayed to the media in a thorough and concise manner so as to familiarize the public with the hospice concept and dying and death issues. This media attention also provides an impetus for further local activity to set up the hospice program. An initial community meeting to begin formal planning for the hospice brings together people likely to support a program, along with the general public.

A staff member from a nearby hospice program provides a particularly effective keynote speaker at this community meeting. After a general introduction, in which perhaps a local or state official underscores the need for the hospice, the speaker with direct hospice experience is introduced. This keynote speaker usually discusses the special needs of the terminally ill and their families after death occurs. Successful models for hospice care can be delineated and the audience urged to view the hospice program as something definitely attainable for the community. Following the speaker’s comments, audience reactions and questions about the hospice proposal are a good indication of the degree of community support. Many persons may have stories to tell and emotions to share, all of which underscore the needs of families for help in caring for terminally ill patients. The chairperson can announce that planning for a hospice will take place with regular weekly meetings. Time, date and place for the first meeting should be announced at the close of the initial community meeting.

THE AD HOC COMMITTEE PHASE

Regular weekly meetings encourage continued involvement of the most supportive individuals, while those less interested members soon tire of the planning sessions and resign from the committee. The remaining core of active workers produces a second benefit of regular weekly meetings–rapid progress toward hospice development.

Professionals in the hospice movement emphasize that administration of programs be independent of other organizations and legal entities. It is probably wiser at this stage that the planning group be considered an ad hoc group with no ties to local hospitals, nursing homes, or special interest groups. This is not to say that the ad hoc group should exclude representatives or financial help from these institutions–involving them will improve communication and facilitate planning at later stages. By avoiding formal ties, however, no risks are taken that might compromise later claims to independent administration.

The first task of the committee is to analyze potential demand for terminal care services. Among the questions which need to be addressed are:

• How many deaths occur in the area each year?

• Of these deaths, how many have a predictable terminal phase? Diseases in this category include cancer, chronic end-stage renal failure, end-stage chronic lung diseases, and end-stage neurological conditions such as amyotrophic lateral sclerosis.

• What proportion of these deaths occurred locally and what proportion occurred out of the area, at a referral center, for example?

• How many of these terminal phase patients died at a nursing facility and how many died at home?

• What were the ages of these patients at death?

This information should be available from death certificates filed with county clerks or county offices of vital statistics. Exact causes of death, places of death, and ages are listed with these agencies and facilitate the compilation of aggregate data. Average numbers can be determined through the collection of data from several years. Some patients die outside their home counties and therefore do not reflect potential patients. Age and sex profiles of patients, along with places of death, give some idea of the type of patients that can be served by hospice staffs. Of course some of these patients may never be referred to the hospice or may decline proffered services.

Another method of examining local needs involves distributing a short questionnaire on hospice issues to clergy, administrators of local nursing facilities, and social service departments at hospitals and county agencies. While this approach perhaps is not as precise as other methods, it does stimulate public awareness. As these people assess their clients to see how many might have benefited from available hospice services, they may recognize to a greater extent the needs of the people they serve. To the advantage of the hospice program, these caregivers provide insights about current terminal care practices. (Numbers may be inflated because some patients will be reported by more than one agency, but this information is still very useful.) Distributing the questionnaire also offers an opportunity for the dissemination of information on hospice care and local planning activities.

The committee needs to select one of its members to take responsibility for recordkeeping and copying. The recordkeeper should be adept at interpreting accurately the group’s plans and getting all this information into edited yet comprehensive minutes. When plans are recorded in draft form for subsequent editing, group decisions become refined rapidly and timely for future meetings. (In the case of Bay de Noc Hospice, some sixty weekly meetings over sixteen months, each of two hours duration, were required prior to onset of patient care.)

The committee must define the geographical area that it plans to serve. This limitation often is dictated by existing geographic or political boundaries (for example, east of the river, or all of the county). Other times, the area may be defined in terms of business-trade areas, boundaries of school systems or locations of hospitals. In fact, the committee may decide to limit hospice care to those patients who use the health care resources available through local hospitals.

Publishing the goals of the hospice program becomes the next priority. This step involves writing statements which incorporate accepted principles of hospice care and descriptions of specific hospice services to be provided.

Points which need to be developed include:

• the service area.

• the anticipated needs of the community in terms of patient and family members.

• the general principles of hospice care.

• the specific characteristics of the local model. Will the service be home care only? Will inpatient services be provided at local hospitals and nursing homes, or will program planners seek to develop a free-standing facility?

• the method for obtaining providers of services. Will all services be provided by non-paid volunteers? Will professional volunteers, like physicians and nurses, charge for services that can be collected from third-party payers? Will the program hire part-time or full-time employees to provide services?

• the role of lay volunteers. A statement about the importance of lay volunteers is needed, along with statements about volunteer training planned prior to patient contact.

• the role of gifts and grants in the financing of the program. Will program planners seek funding from local or national service or charitable groups?

• affiliations with other organizations. Will program planners seek ties with the local health department, visiting nurses, nursing homes, nearby medical schools, etc.?

• the approximate timetable for development of the program. When will patient care services begin? When will the inpatient or free-standing facility arrangements be available? When will the training program begin? When will the director be selected and begin work? These and other timeline decisions–if applicable–should be tentatively listed.

• the proposed method for evaluation. How will the program’s success be evaluated? When will this determination be made?

By the time these goal statements are completed, the group will attain consensus so as to provide guidance for future work and representation of its objectives to the larger community. Clear language should be used in these statements to explain the hospice concept to talented individuals or helpful agencies recruited. Extra effort to insure thorough and precise language and to promote consensus saves time and misunderstandings later.

An equally important function of the ad hoc committee is to supervise the establishment of the permanent administration which will accept legal responsibility for patient care. In most instances this action entails establishing a nonprofit corporation under the laws of the state. The state treasurer’s office or commerce department can provide the necessary papers for filing articles of incorporation. Purposes of the corporation must be stated in the articles. In most cases, general statements about hospice care define these purposes satisfactorily. Although precise goal statements are not necessary at this time, filing early allows the process of incorporation to proceed while the group continues working.

Reviewing the corporation’s tax-exempt status by both the state and the Internal Revenue Service may take as long as a year, so it is important to begin filing procedures at this time. Revenue agents look for certain language in articles of incorporation which deals with the disposition of corporate assets in the event the corporation dissolves.*

A lawyer or certified public accountant may be willing to complete necessary tax forms.^† Hospices are recognized as tax exempt under the rubric of “charitable” organizations; however, formal applications still must be submitted prior to claiming tax exemption. State exemptions often require applications for licenses to solicit donations, which have the effect of certifying the tax-exempt status. These materials are available from the state attorney general, state treasurer or a legislator.

Both state and federal applications require submission of a constitution, by-laws and a list of officers and directors. Books on how to write a constitution are available in most public libraries, and sample constitutions can be requested from established hospices. Both the president and secretary of the organization, elected under the rules contained within the document, should sign and date the document. All amendments should be appended, with the date of adoption and the signatures of the current president and secretary. This assures that the constitutions is “conformed”–a requirement of the IRS. In general, it is best to keep the constitution brief and concise. A source of arbitration for questions not answered by the document, such as Roberts’Rules of Order, is helpful. The following items must be defined in the constitution: organization title; objectives and purposes; membership classifications and requirements; election and termination of membership; rights and responsibilities of members; meetings; process of calling a meeting, quorum, and order of business; elections date and methods; board of directors and their duties; officers and their titles, duties, and rights; management of unexpired vacant terms; titles and duties of each committee and method of election or appointment; and methods for amending the constitution, defining the rules for notification and the vote required.

Securing insurance coverage is another consideration for early attention. A good idea is to contact an independent insurance agent, who will deal with a range of insurance carriers, or the National Hospice Organization. The agent can assemble a coverage package to serve specific needs. Most common coverage includes office contents; bodily injury and property damage for workers in the program; professional liability for nurses and other workers; loss or damage of patient property; and liability for non-owned automobiles. Many underwriters have little or no experience with hospice programs; therefore, the process of securing coverage may be protracted, involving considerable time to educate both the local agent and the carriers. This coverage can be expensive–upwards of $2,000 to $3,000–depending on the type and amount of coverage. Some hospice planners may choose to defer the purchase of insurance. It is wise, nevertheless, to ask a carrier to make an early offer, rather than encounter lengthy delays if the group chooses to buy insurance later.

A mistake that often is made is to “surprise” someone or some agency important to the hospice program, creating unnecessary frustration or infighting. This can be avoided by thinking ahead about decisions being made. Will certain decisions offend anyone? Does anyone have a natural interest in the hospice concept or feel threatened by it? Will someone else know something that might be helpful in this area? Who are people who want to be informed of most substantive decisions? It is better to err on the side of informing individuals who later become disinterested than to omit those who may interpret omissions in a negative manner.

Another mistake is open criticism of existing services and caregivers because of a desire to convin...

Table of contents

• Cover
• Half Title
• Title Page
• Copyright Page
• Table of Contents
• Contributors
• Preface
• Preface to the First Edition
• Introduction
• CHAPTER 1 Starting a Community Hospice
• CHAPTER 2 The McGill University Palliative Care Service
• CHAPTER 3 Issues in Hospice Administration
• CHAPTER 4 Training an Interdisciplinary Team
• CHAPTER 5 The Physician’s Role in a Hospice
• CHAPTER 6 Staff Stress in Hospice Care
• CHAPTER 7 An Emotional Support System for Mourners
• CHAPTER 8 Spiritual Help for the Bereaved
• CHAPTER 9 The Ethics of Hospice Care
• CHAPTER 10 Privacy and the Right to Die: Legal Issues in the Care and Treatment of Terminally Ill Patients
• CHAPTER 11 Hospice: A Selected and Annotated Bibliography
• Index