The predictive statement below by Dennis Rezendes, Hospice, Inc., New Haven, Connecticut, quoted in Stoddard1 seems very optimistic about a movement that is neither generally understood by hospital personnel nor widely implemented in hospitals today. The potential of the hospital goals and methods for hospital use have yet to be fully developed. The initial efforts in one hospital unit are described in this paper.
Definitions of "hospitals" and "hospices" show some of their similarities and differences.
Webster2 defines a hospital as: (i) a charitable institution for the needy, aged, infirm, or young; (2) as an institution where the sick or inj ured are given medical or surgical care; and (3) as a repair shop for specified small objects.
Although not necessarily reflective of our hospital, Stoddard describes the hospital as a place that welcomes the body as so many pounds of meat, filled with potentially interesting mechanical parts and neurochemical combinations. Further, the hospital strips one of all personal privacy, all sensual pleasure, every joy the soul finds delight in; and at the same time seizes one in the intimacy of a total embrace. "Hospital makes war, not love."1
The verm "hospice," on the other hand, is derived from the medieval term meaning a place of shelter and hospitality for travelers on a difficult journey. The hospice of today has come to mean a place of hospitality for the traveler from one life to the next.1
The caring programs for the dying, the hospice programs that we know today, are programs of medical health care for patients with terminal illness.
The hospice programs in the United States have developed from Ciceley Saunder's model at St. Christopher's in London. The basic characteristics of the St. Christopher's Hospice Program are as follows: centrally administered hospice pro-In gram with in- and out-patient services; primary unit of care- patient and family; symptom control, physical, emotional, spiritual; physician-directed interdisciplinary care; utilization of volunteers; services available on call; staff support and communications; bereavement follow-up; and hospice services based on need.
Variations of the model may be seen: at the House of Calvary in New York, founded in 1899; in a freestanding hospice under construction at Branford, Connecticut; at the inhospital at St. Luke's, New York; in home services in California and Florida; and the Hospice Incorporated, Buffalo, New York.
The central question that this paper addresses is, "Can a hospital serve as a hospice?" My opinion after practicing nursing for a year as a clinical nurse specialist on a Discharge Planning Unit in a Veterans Administration Medical Center is most definitely, "Yes!"
Our Discharge Planning Unit was originally established as a unit on which patients could reach their maximum level of wellness, rehabilitation, and independence, and patients and families could reach their most knowledgeable state prior to discharge back into their homes. Old practitioners have long ago learned that idealism and realism are often at opposite ends of the spectrum. So it has been on our new unit. The Discharge Planning Unit (DPU) was barely conceived when it was realized that for some patients, DPU could also mean a "Unit for Peaceful Dying."
Candidates for this unit are medically stable patients who are referred by staff physicians to release beds on medical and surgical units for patients who need the daily monitoring of a physician and by medical residents who are eagerly awaiting a new patient with a new and challenging disease entity. On occasion, when the patient is screened and accepted for our unit, the referring diagnosis has been made prior to the collection of all the diagnostic data. On arrival to the unit the actual diagnosis frequently varies from the initial or referring diagnoses. Thus, some of our patients are not candidates for rehabili tation; some are confronting terminal disease, not necessarily cancer. To date, goals have had to be set to meet the needs of six dying patients and their families.
Our goals and services for this small sample of men, their families who have passed through our lives, and we through their living and dying experiences, have both been very much alike and, in some elements, somewhat different from the previously stated characteristics of hospice. The remainder of this paper will describe thesesimilarities and differences.
The Administrative Aspects of Hospice
Our unit is not under a central autonomous hospice administration. It is a nurse conducted, primary care unit within the administrative structure of a Veterans Administration Medical Center. We who provide direct care to the patients try hard to keep the environment as personalized and homelike as an institution can be. Patients may wear their own clothing if they choose. Families have unlimited visiting hours and are encouraged to participate in the unhurried care of the patient.
We are an interdisciplinary staff of creative, caring, sensitive women and men with a clinical nurse specialist leader. Our collaborative goal is to enhance the dying patient's remaining life and to see the patient as a total person and member of a family.
Similar to the basic premise of the hospice to provide care in the institution and at home, we try to prepare the patient and family for spending as much time at home as possible. We arrange for medications, supplies, and equipment to go home with the patient; however, we have no provisions for home care follow-up except through community services. We provide back-up inpatient service when home care is not feasible. The clinical privileges of the nurse specialist provide for granting varying lengths of authorized absences without severing the necessary link to the health care system. The fear verbalized by patients and families of severing this link is justifiable considering the complexity of today's large bureaucratic health care system.
Primary Unit of Care- Patient and Family
Like the original concept of the hospice, the total patient care we give includes working with the family and other significant patient relationships. The patient and family are interviewed separately and then together in order to grasp the total picture of the relationships. Remembering to respect the wishes of each is paramount. Listening to verbalizations and observing the nonverbal communications are especially important. Support and guidance aré provided by the family in coping emotionally as well as in solving social, legal, and economic problems.
Symptom Control: Physical, Emotional, Spiritual
If the patient or family desire to know about the medication, they are informed to the extent that it is therapeutic. The clinical nurse specialist has privileges, according to protocol, to alter the prescribed medical regimen to meet the needs of the patient as they relate to pain, nausea, vomiting, dyspnea, depression, lethargy, and other physiological symptoms. If on admission to the DPU, the patient has a history of repeated injections, it is only logical to change him to oral medications for as long as he can tolerate that route of administration. There is never fear of or concern about addiction. When nausea is a problem, antiemetic drugs are given prior to meals. If anemia worsens, blood is administered so that the following weekend can be enjoyed with the family at home. If his teeth ache, the dentist is consulted. If he is short of breath, oxygen is administered. When he is ready to read, his glasses are brought from home. And most importantly, comfort is provided by special diets, between meal nourishments, emptying the distended bladder, relieving constipation, cleaning the mouth, smoothing the sheets, rubbing the tired bottom, and wearing clean pajamas from home. It is a well-known fact that counseling a person lying in a wet bed is ineffective.
Patting the shoulder, holding the frail but yet warm hand, embracing the distraught spouse, and alerting the clergy to the need for his services are all a part of the nursing role. In essence, our goal is to cure that which is possible, to relieve often, and to comfort always. Our focus is on treating the symptoms not the disease. There has not yet been a point when "there is nothing that can be done."
Physician-Directed Interdisciplinary Care
After observing this sample of patients with terminal illness and their families for the past year, I am convinced that they give very little attention to whether their primary care provider is a physician or a nurse so long as the person has the authority and the sound judgment to make decisions that meet their needs and allay their fears of abandonment. Our unit has provided evidence that given the clinical privileges to do so, some nurses can effectively use a health care system to the advantage of terminally ill patients as well as, or better than, some physicians whose orientation is primarily directed toward a cure. Further, it is my impression that most of our physician colleagues would agree. The nurse must first, however, explain to the patient and family that her program is a nurse conducted one and that at no time will the patient be denied access to the physician. For the most part she will be their advocate, provider of care, and seek medical advise on his behalf as necessary. Ready access to a physician consultant is essential for emergency medical conditions and medical management of them. It has been a rewarding experience to receive overwhelming support from medical colleagues, alleviating any preconceived notions relative to medical/nursing jurisdictional boundary disputes.
The clinical nurse specialist should not assume that she can carry out the role alone. There must be frequent collaboration with nursing colleagues and with all the other needed disciplines and services including: radiology, laboratory, rehabilitative medical service, social service, dietetics, speech therapy, pastoral services, prosthetics, and with medical specialists as needed. It must be remembered that we all have much to learn from each other.
The volunteers in the Veterans Administration Medical Centers serve the much needed functions of providing friendship, companionship, writing letters, shopping, and escorting throughout the hospital to various clinics, recreational activities, and worship services. The lady who regularly delivers the morning paper knows each patient by name and the corner of the bedside stand where her quarter is waiting.
Services Available on Call
Hospice services are available seven days a week, 24 hours a day, with nursing staff bearing the primary responsibility. The patients of our unit know that if they are at home they may call back for advice or come back whenever the circumstances warrant returning. Every effort is made before the patient's authorized absence to be sure that he has the medicines, devices, dressings, and all he will need to make his stay at home as comfortable as possible.
Staff Support and Communications
We have found that opportunities for the staff to discuss their feelings and concerns are essential in such emotionally draining settings. Meetings to share may be prearranged or spontaneous, as needed. We have a mutual understanding that at times we must stop and discuss and try to understand why a certain spouse is behaving as she is. We may occasionally need toexpress our own emotions with one other. At the time of death, when we have placed the cooling hand we have held so long across the now still chest, we need to know that it is all right for the tears to trickle down our cheeks. As we embrace the spouse we have learned to know so well, there is a mutual awareness of sharing a very intimate experience. By this time, we have all lost a very significant other. It was so good to hear a staff nurse say "I'm glad you are here to help me prepare his body for the morgue, I still find it hard to believe. Just last week he brought bubble gum for my little boy when he returned from pass." We, the staff, must know we have and can depend on each other.
Hospice-like bereavement services are extended to the family during the period of bereavement. We send a letter of condolence from the staff and follow-up with a phone call at a later date. It has been common for the spouse to write us. Even though it has been difficult for families to return to the unit following the bereavement, some have successfully made the effort.
Hospice Services are Based on Need
Our unit like a hospice must be based on need. Those who can manage at home with social supports are encouraged to do so. Veterans Administration Medical Centers are certainly not exempt from having to think about the economics of new programs. When, however, patient and family circumstances are such that both in-and out-patient services are required, it is good to know that hospice-like care is available, although it has not been designated as a special program of service.
Though we have given care to only six patients with terminal illness and their families on our Discharge Planning Unit during its first year of operation, already we have evidence that we are meeting each of the criteria of a hospice program. All of us, patients, families, nurses, physicians, and other staff, have benefited from this humane approach to "providing shelter and hospitality to these travelers on a difficult journey."1
- 1. Stoddard S: The Hospice Movement A Better Way of Dying. Briarcliff Manor, New York, Stein & Day, Scarbourough House, 1978, pp 2-3, 123. 182-183.
- 2. Webster's Seventh New Collegiate Dictionary, G 8c C Merriam Co. Springfield, Massachusetts, 1971.
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