Program for the Design and Operation of The Nathan Adelson Hospice, circa 1980

A PROGRAM FOR THE DESIGN AND OPERATION OF : THE NATHAN ADELSON HOSPICE NEVADA ARCHiTROniCS ARCHITECTS & ENGINEERSDonald H. Baepler Al Benedict Eli Boyer David Brandsness Sharon Brandsness Irwin Buchalter MERV ADELSON ? PEARL ADELSON ? IRWIN MOLASKY ? RENNY ASHLEMAN ? Anthony Carter, M.D. Don D i g i I i o Lovee Duboef Harold Erickson Hank Greenspun Charles Kilduff, M.D. Samuel Lionel Co-chairman Co-chairman Co-chairman Secretary- Treasurer Jerome Mack Marydean Martin Susan Molasky Michael O'Callaghan Owen Peck, M.D. Lee Rich Allard Roen Art Smith William Stephan, M.D. Muriel Stevens E. Parry Thomas Richard Thomas David Zenoff BOARD OF TRUSTEES OFFICERS MEMBERSFOREWORD C Programming is the process leading to a statement of an architectural problem and the requirements to be met in offering a solution. Programming is problem seeking whereas Design is problem solving. These are two separate processes requiring separate attitudes. Only after a thorough search of the problem can a solution be attempted. Nevada Architronics separates Programming from Design and uses separate people who are expert in analysis for each process. Through analysis we form the basis of a more comprehensive solution that stays within the limits and scope of possibili?ties while elevating the client?s awareness of good design. Above all, Programming is not a list of wanted spaces or of rooms desired adjacent to each other. It was through in-depth programming that Nevada Architronics has been able to achieve significant success in health care. The contributions of the staff of the Hospice and the entire Board of Directors cannot be overestimated. The dedication of all concerned is that of inspiration. Mr. Irwin Molasky?s encouragement and support are greatly appreciated and of course the support of the entire board was absolutely essential. Ernest Libman, Director of the Hospice, has been a tower of strength and inspiration. Dr. Willis Russell has been a consistent contributor of his professional expertise and continual support. The Hospice staff of Sondra Daughety, Sonya Gibson, Linda Holland and Allie Rockhill have all provided invaluable assistance and professional expertise, besides being extremely pleasant people to work with. Connie Edwards and Clark Lord provided the insight into the emotional pain suffered by the family care giver. Finally, Mr. Ron Joyce, now finishing his studies at M.I.T., provided the patience required and the articulation needed to formalize this document. Mr. Caudill of Caudill, Rowlett and Scott, whose program primer I followed, is acknowledged for his pre-eminence in the field. Programming is always an enriching experience, and being able to contribute to the Hospice Movement is greatly appreciated.BACKGROUND Nathan Adelson died of cancer in April, 1978. He was one of the community?s most respected and progressive leaders. Founding Sunrise Hospital was one of his greatest accomplishments. His family and friends determined to commemorate his life by establishing a fitting memorial. The Nathan Adelson Hospice is the result of the desire to honor his memory. On November 22, 1978, The Nathan Adelson Hospice was incorporated in the State of Nevada as a non-profit organization with its primary purpose being to establish a hospice program and construct a facility for providing hospice care. On June 25, 1980, a letter of determination from the Internal Revenue Service was received indicating that donors may deduct contributions to The Nathan Adelson hospice, as provided in Section 170 of the Internal Revenue Code. This has been the philanthropic base for the entire undertaking. The Nathan Adelson Hospice began under the direction of a Board of Trustees who had been selected for their outstanding record of community leadership. It was recognized that it was exceedingly important to draw from all facets of the community. The medical care establishment had to view the hospice as an asset. Also it was essential to acknowledge contributions of the existing hospice program of the Clark County Health District and to provide the basis for complimenting each other?s efforts. The first few months were spent almost entirely in learning about the hospice concept and the reason for its growing acceptance. This background was essential in formulating realistic objectives and goals. Hospice financing was explored in detail to assure the feasibility of the endeavor. The Board of Trustees decided that the first step in the delivery of hospice care was to develop a hospice home health program. The State authorized The Nathan Adelson Hospice to provide home health services beginning April 28, 1980. In anticipation of this, a hospice staff had been employed with sufficient time allowed for a thorough orientation to the hospice philosophy, and Dr. Willis Russell agreed to serve as Medical Director of the hospice program. The initial staff consisted of two nurses, a social worker and a chaplain consultant. The bereavement component of the home health program was implemented. The Medicare survey conducted early in June 1980 resulted in The Nathan Adelson Hospice receiving approval for Medicare reimbursement, retroactive to April 28, 1980. During the first year of operation, the home health program provided hospice care to sixty terminally ill cancer patients and their families. Fifty-five members of the community have participated in one of the three hospice Volunteer Training courses conducted during the first year of operation. Presently, forty active volunteers provide a variety of services to hospice patients and families. Program documentation reflects approximately 1800 hours of volunteer service during the past year. From inception and during the first year of operation, an active fund raising program was underway. Its purpose was to provide the funds necessary to build a hospice program that would provide a model in setting standards for hospice care. Monies donated and pledged were to underwrite the home health program and provide the funds necessary for constructing The Nathan Adelson Hospice facility. The first year?s experience reinforced the value of a hospice facility which would be uniquely suited to meet the needs of the terminally ill cancer patient and his family. There were repeated instances in which hospice patients who could no longer be cared for at home had no alternative but to be hospitalized. The hospice facility would have been a far better alternative. The patient would have benefitted from continued hospice care which would haveTHE CARE PROGRAM OF THE NATHAN ADELSON HOSPICE by Theodore K. Koff Ed.D. Hospice Consultant The program of the Nathan Adelson Hospice will be based on the following characteristics: 1. The patient and his family comprise the unit of care. 2. Emphasis is placed on symptom control. 3. There is overall physician direction. 4. A continuum of available services includes home care, inpatient care, day care and night care, and bereavement services. 5. A single point of entry into the hospice program and services is established. 6. Comprehensive services are provided by an interdisciplinary team with emphasis on around-the-clock availability of medical and nursing skills. 7. Volunteers are an integral part of the team of care givers. 8. Coordination and cooperation with existing community health and social agencies is emphasized. 9. Staff development and training are stressed. 10. Evaluation of the program is continuous. Each of these characteristics will be elaborated upon: 1. The patient and his family comprise the unit of care. The person (or patient) in need of or utilizing hospice care includes family and friends as defined by those persons who are significant to the individual requiring services. The person who comes to hospice for care is in many ways an extension of other people, family and friends. The pain and trauma experienced during the period of dying are extended into the lives of many others. Other lives are upset; others feel the pain and anguish; others suffer as a life ends; and others are confused and bewildered. Interwoven into this network of feelings and concern is the uncertainty that results from being unable to influence a cure. Feelings of helplessness and despair are inevitable under these circumstances. Family members, as well as other caretakers, must be helped to appreciate the importance of caring and the ability to make a significant contribution when a cure cannot be anticipated. Hospice care is predicated upon an understanding of the intimate inter?relationships, dependencies and supports in the family relationships and the need to consider the total family as the client involved in hospice care. For purposes of this discussion, family is defined to include close personal associations, whether or not there are kindred attachments and without judging whether there is positive or negative regard. The intermixing of close feelings, the sense of importance and of concern makes the individual part of the family relationship. In a sense, community or circle of signi?ficant others is what is meant by family . Hospice care recognizes that the way every member of the family deals with the dying of one of its community influences the way that person will die and the ability of hospice to have impact on that death. In many cultures this will include extended family and clan or group. It will not be unusualto have as many as twenty people who are involved intimately with the patient and who will wish to be in the area where their loved one is dying. Families so defined must from the outset be involved in the care of the dying person and be considered along with the client or patient in the caring process. Family members should be included in the planning of care and encouraged to continue to offer their own care in both the home care and inpatient aspects of the program. The program and services should at all times communicate that their intended role is to support the family rather than taking over. Decisions regarding the intensity of hospice staff involvement in the family care should be based on the readiness and capacity of the family to continue to provide care. Any hospice commitments to intensive care shoud be readily rescinded when the family is ready to undertake it. Transitory dependent family behavior should be understood and hospice should be ready to do more %hterT the family needs more help. A family's experience connected with the death of one of its members will determine how surviving family members will deal with dying in the future. If hospice care clearly demonstrates that dying can occur without pain, with dignity, and with the dying person able to maintain contact and control, survivors are likely to develop more positive responses toward death and dying. The residual pain for family members will be reduced if they believe their loved one died an appropriate death. The bereavement will be easier because the extra trauma caused by witnessing the pain of dying will have been omitted. 2. Control of symptoms. One of the goals in the care of any person in the health system is the maintenance of physiological function. Dying persons, especially those with cancer, experience misery and pain which interfere with physiological as well as psychosocial functioning. Among the most distressing symptoms are pain, nausea, diarrhea and/or constipation. Care in the hospice program is directed toward overcoming pain and suffering by controlling the symptoms which cause or promote distress. Pain or the fear of pain is an all encompassing feeling, imprisoning the person who experiences it and preventing his thinking or feeling any other sensation. Being freed from pain or the fear of having pain makes a person feel safe and this feeling of safety gives him independence to be and to live. Relieving pain and preventing pain prolong living and permit the individual to experience other thoughts and sensations. Providing temporary relief of pain is inadequate because the person knows his awful visitor will return and he anticipates the oncoming sensation with dread. Then, as soon as pain does return, the skeletal muscles become tense, intensifying the sensation of pain and its torment. The world for that individual is "all pain." Pain can be prevented if a pain reliever is given on a regular, rather than on an "as needed" basis. The experience of many in the hospice movement is that drugs can be administered orally on a regular basis and the patient can remain alert, pain free, relaxed and free to think, able to experience and even to enjoy living. Whatever the prescribed medication, it is important to give the narcotic at regular intervals, only to withhold or postpone adose if the person is sleeping or groggy. Dosage should be at such a level that the individual remains alert, neither overwhelmed with distress nor incapacitated by drugs. Concerns about addiction are irrelevant if the per?son given the drug has a terminal illness; no state of euphoria is being promoted and the drug is utilized only to relieve physiological pain. Another distressing symptom of many terminal illnesses is nausea, and its management frequently depends upon the cause. Several drugs appear to be effective without causing undue sedation; the drug of choice will depend upon the experience of the physician recommending it and the reaction of the patient receiving it. Diarrhea is a frequently occurring symptom. Its management can be accomplished by several drugs to reduce peristalsis. If morphine is given for pain control it also has been found to be useful in controlling diarrhea. Skilled nursing care, whether administered in an institutional setting or at home, by a professionally educated nurse, a caring person, or family member, is the key to symptom control. Comfort and continued physiological and psychosocial functioning are the goals of care when cure is not possible. 3. Physician direction of the program. The physician is the key person direct?ing the care of the dying person. Medical care continues whether the goal is cure or comfort. The doctor must prescribe drugs for management of pain, alleviation of nausea and treatments or comfort measures for management of incontinence and/or constipation. The physician is the professional direct?or of hospice medical care and its most important liaison with the medical community. Physicians in a community will refer patients to hospice for management of the chronic pain frequently experienced by the terminally ill. The hospice physician refers patients to other medical resources such as radiation therapy as an adjunct in pain relief. Physician management makes it possible for hospice patients to move back into the acute care system when such a referral is deemed appropriate. 4. Continuum of services available. The full continuum of hospice care includes: a) Home care. b) Inpatient care. c) Day care or night care in the inpatient facility. d) Bereavement services. These services should be coordinated in a comprehensive continuum having a single administrative structure and a coordinated intake process. Inherent in the hospice concept is the recognition that rapid changes take place in the individual's and family's capacities to cope, which are affected by remission as well as by crises. When multiple levels of care are available, the intensity of service as well as the location of the ser?vice can be varied and modified to meet individual needs. Evaluating a candidate for the continuum of hospice care, and promoting the concept of hospice as a continuum, implies the availability of every level of care for each participant. Should a dying person and family apply for hospice care, with physician support, and specifically request the in-patient level of care, careful assessment might make it clear that the applicant is a good candidate for hospice care but could be supported com?fortably at home, although there is a high level of anxiety. The family should be encouraged to care for the person at home for as long as possible, postponing the use of the institution's resources until home support is no longer adequate. A promise and commitment that the institutional care will be available when needed must, of course, be made and honored. It is impor?tant that new families be admitted into the hospice system only when there is assurance that the entire system can be responsive to their patient's needs. The four essential components of hospice care previously listed will now be described in some detail: a) Home care, made possible by home health services, is part of a hospice program which provides nursing, counseling, occupational and physical therapies, dietary counseling, social services, medical and phar?maceutical services in the home as they are needed. Many ethnic groups believe that care of a relative must be provided in the home rather than in an institution unless acute care is required. Such wishes and beliefs must be respected. Home care takes professional health services into the dwelling places of the terminally ill, respecting such cultural values and helping the patient to remain independent. Patients can remain at home among fami?liar surroundings with their independence limited only by their frailty. Remaining at home increases the patient?s sense of control over his own life and permits him to make decisions and choices. Maintaining the patient in the household is dependent upon the func?tional status of the individual and the support structure of the family, the household and neighbors. The assessment for hospice care must, therefore, include evaluation of the individual's social support structure, which oftentimes extends beyond or outside of the family. A thorough appraisal of the physical characteristics of the household, with recommendations for adjustments enhancing the possibility of caring for the individual at home, is essential before any recommen?dations for home care can be made. In other family situations, it may be easier for the family to have the c patient admitted to an institution than to organize care at home. Such a decision may lead to feelings of guilt which must later be confronted. Awareness of how the dying person is treated by other family members may affect children who, of course, observe how their parents treat terminally ill grandparents. Home care can provide resources which help family members sustain their dying relative. It must be recognized, however, that home maintenance may not always be in the best interest of everyone involved. Ongoing evaluation of the patient, family members, and other caregivers is necessary in order so that changes that take place may be recognized and evaluated. Care of dying persons is not static and additional ser?vices may be required as the patient's condition, or family ability to cope changes.b) Inpatient care within the institutional facility must be available on a 24-hour-a-day basis. Once it has been ascertained that an acute care facility is inappropriate, the physician may refer a patient to the hospice for care because cure is no longer the appropriate goal and the patient has distressing symptoms that cannot be managed at home or needs skilled care which cannot be provided there. Even when the patient is caved fov at home , a close relationship must exist with an inpatient facility, which can offer 24-hour nursing care in the event that the person giving care at home becomes ill or for some other reason cannot continue to function. A physician's services can be made available at the hospice on very short notice whenever the family can?not handle the situation at home. When family relationships are strained or difficult, the added burden of illness may create overwhelming problems. Admitting the terminal patient to the inpatient facility can sometimes salvage a threatened relationship, providing the patient and his family a respite from the burden of guilt and other negative emotions brought on by the complex situation. Family members can end the relationship when the patient dies, receiving counseling and staff support in whatever decisions they then must make. c) Day care or night care can provide all the hospice services to a patient when key family members can no longer be in attendance 24-hours-a-day. In day care the patient may be brought to the hospice facility for several hours a day during which he receives food, medication, lodging and nursing care so that family members or other caretakers may be temporarily relieved of their care responsibilities and have time for socialization, business or just time off. The patient returns to his home for the night. Alternatively, night care can be provided to the ill person that will be most helpful. By providing a combination of resident and nonresident services, the hospice program will be able to vary appropriately both the quantity and quality of services supplied. Patients can remain with their fami?lies for part of the day, evening or night, with hospice services complementing the home and giving respite to family or other caregivers. Day or night care services also may make it possible for patients who live alone and can manage during the day or during the night but not for a 24?hour period to maintain a greater independence. The flexibility of this program aids both patients and those involved with them. By having it, hospice clearly demonstrates that the ser?vices offered are designed to meet the varied needs of the recipients of care, the patients and their families. d) Bereavement services will be provided to families and/or those respon?sible for care after the death of a patient. Part of care of the dying is care of the survivors. Bereavement follow-up is actually preventive health care. In the first year after the loss of a family member or other intimate, there is increased vulnerability to illness for the survivor, who also may be susceptible to increased drug ingestion (including that of alcohol) and/or depression. Visits to the bereaved, offering counseling and support, should be made available for a period of one year after the patient's death or until it is clear that the services are no longer needed.The dying person and his family are the core of concern for the hospice team. When the patient dies, the death itself changes the focus of attention from the deceased to the survivors. There may be both an outpouring of emotions and an unquestionable sigh of relief that the suffering is over and the traumatic part of life is ended. Survivors are not at first exposed to the loss and loneliness because of the focus on myriad details involving financial matters as well as relating to family members and visitors. Families and friends converge?where survivors are fortunate to have these concerned persons?but all at the same time. It is at this time that hospice services reach out to the bereaved to complete the program of care. In our contemporary society, the mourners are urged to return to a state of normalcy as quickly as possible, cutting short the period of grief and mourning. It is important to note that mourning, in most cases, lasts for at least a year and that rushing its completion may prolong or intensify the entire process. It is for this reason that bereavement services should be available for that length of time. The bereaved may review the time before the death for evidence of others? failure to be helpful to the dead family member. Some may accuse themselves of negligence or exaggerate minor omissions. These problems can be mitigated by visits from a hospice staff member who listens to the survivor without criticism of any expressions of guilt. The bereaved can thus discover it is safe to let out pent up feelings and is then free to get on with the grief work. A difficult time for a survivor is usually the first anniversary of the death. It is a time when support is needed and a visit from a hospice staff member is appropriate. It may be appropriate for the hospice staff to identify "high risk" family members and to follow these persons more closely during the bereavement period. Another way of assisting survivors is to encourage their participation as volunteers in the hospice program. Many find that their burdens lift as they help others who are experiencing what they have gone through. This is usually helpful in overcoming depression in the final stage of grieving and often encourages the assumption of a new role. . Single point of entry into the program. The most efficient and humanely responsive way to offer services is to provide a single point of entry into the program. This should begin with an assessment and intake procedure during which a coordinator or facilitator assesses the family as well as the patient, their resources and their limitations, and then acts as advocate. The assessment should take place immediately after the referral from a phy?sician is made and should include an assurance to the patient and family that Hospice stands ready to provide services 24-hour-a-day, if it is selected as the appropriate setting for that patient's care. Although the hospice system may become far reaching in the number of people served and the variety of locations of home care, inpatient care and other services, it is essential to maintain a single point of entry into the system. This central point of control is essential to assure that the totalhospice program will be available to each applicant from the moment he is accepted for care. Finally, it should be noted that applicants for hospice service and par?ticipants in the program are prone to be depleted of physical energies and need to focus on the end of life opportunities rather than the bureaucracy of any caring system. The hospice continuum of care, the evaluation, the case manager's role, and all the other characteristics of the continuum are built into the system to ease the trauma for the dying person and his family. The organizational structure is required to assure the proper deli?very of hospice care and to minimize the problems and red tape of transfers from one level of care to another. Once a patient has been admitted into the hospice system, all energies must be directed toward providing appropriate care for the dying person and his family. The organizational structure must never become self-serving or imitate those of other modes of care for traditional values alone. Hospice care is based on the urgency of need, the limited time available and the potential crisis for individual and family. The management plan must assure that at all times these needs are kept in focus and the dying person is understood to be the only reason the organization exists. The organizational behavior must continue to represent this ideal. The continuum must begin with a procedure by which it can be determined whether or not hospice is the best care program available for the person involved. Hospice may not be the best program for all dying persons. The following are situations where hospice care may not be appropriate: 1) The dying person or family cannot deal with the dying and find hospice too threatening to be helpful. 2) The candidate may be too close to death to justify a move to another care setting or change in the routine of care he is receiving. The next important part of the continuum is the gatekeeping function that coordinates the service functions with the needs of participants. Whether the function is labeled "gatekeeper," "casemanager," "facilitator," or any other name is not important, but this function must be performed. Essentially, what is required is that one staff person, with an overview of the total system, coordinates the services for each participant, assuring that each is neither underserved nor overserved. The case manager, while not directly involved in providing care, maintains an overview of the progression of services without having to defend or justify his own service function. The case manager can assess the household, evaluate the social support network and provide the coordinating function especially important in sustaining a person at home. The case manager is the facilitator for the individual using the continuum of hospice care. The case manager assures the continuity of care and the capacity of the continuum to meet the changing needs. 6. Comprehensive services cooperatively provided by an interdisciplinary team make possible around-the-clock, on-call care. The hospice team is a com?munity of caring. The individuals selected for the hospice and the interre?lationships among the team members must be quite special. Under the overall direction of a physician, the team should be made up of nurses, social workers, a clinical pharmacist, physical and occupational therapists, a ?a s. asssmmsmchaplain and the administrator of the program; volunteers comprise an integral part of the team of caregivers. While it is perfectly clear that 24-hour service is provided in the institu?tional environment, the same continuity of coverage must be provided to sup?port care of the dying person at home. Anxiety in those persons providing home care often is related to the uncertainty of receiving needed supports at night, on weekends and on holidays. Hospice has to assure the availabi?lity of the 24-hour support system and should carefully instruct the par?ticipant on how to use the system. Emergency phone calls can be routed through the institutional setting, and medical and nursing services will be made available. 7. Volunteers are an integral part of the team and are very much part of a hospice program. They can act as activity assistants, help with inpatient care and bereavement services, assist with clerical work and receptions, transport patients and help with small chores such as providing reading material. Volunteers link the community to the hospice facility and can also act as "friendly visitors" to home care patients. The nature of hospice service makes volunteers important members of the care team. Volunteers provide a variety of services, based on individual capa?city and skills. The volunteer should never be considered a second-rate staff person; the recruitment, screening, training and supervision of volun?teers should be comparable to that provided for paid employees. Volunteers should be included in staff meetings and they should participate when appropriate in team meetings and other educational sessions. Expectations of volunteers must be high and each individual volunteer must be given enough training and involvement to help assure success. Not all volunteers are skilled in interpersonal relations with dying persons or comfortable with them. Some may be very skilled in this area. Volunteers who so prefer can be used in a variety of roles covering all the management and service aspects of the hospice community. Cooperation and coordination with existing community and social agencies is essential. A program such as hospice cannot exist without being part of the health care continuum in Las Vegas. Referrals to and from physicians, acute care, long term care, and home care programs are the sources necessary for hospice to exist. Hospice care is distinctive and emphasizes relief of symptoms when health restoration is no longer possible. Mitigating or alle?viating symptoms is known as palliative care. This allows a wider scope of action than cure in that it includes ideals and goals in addition to seeking so-called "normal" physiological and psychological function, among them com?fort and ease. The significance of this distinction is challenged where a palliative care program is introduced into a curative care environment, i.e., hospice care introduced into an acute care (hospital) or long-term care (nursing home) environment. In the curative milieu there are dual goals: curing and caring. These goals are internalized into the structure of the organization, its medical care, its total services and, therefore, the expectations of its client group. Whatever inconveniences exist, such as diagnostic testing, a regimented life style and the pain and nuisance of treat?ment modalities, are tolerated because they are seen as contributing to generally accepted ends of cure. Palliative care includes relief of pain and discomfort. Pain relief is occasionally achieved by radiation therapy in certain cases of terminal cancer. This means physician referral to a hospital or clinic for treatment. The hospice medical director will make such referrals when appropriate. Community oncologists, internists, surgeons, and family prac?titio