The needs of dying individuals and the extent to which they are met by professionals has been given spotlight attention in recent years. While much progress has been made toward making the health care system more responsive to dying persons, gaps continue to exist. For many patients, one gap existing is between specialized personal services suggested within the popular concept of hospice and their needs resulting from the absence of physical, mental and interpersonal resources. With the aging of America, there will be an increasing number of people who will die alone because they are lacking resources and are in a health care system that is not adequate to their needs. These individuals, identified hereafter as the resource poor present a unique challenge to the health care system, which should accept no compromise in resolving human needs among people in the terminal phase of life.
Analysts probing the care of individuals who die in institutions have identified a range of goals for care.1"1 There is a consensus that pain control and remission of symptoms are treatment goals which should occupy a major portion of caregiver time and attention. In addition, the institutional staff is often expected to facilitate the maintenance of social relations and contacts as the dying patient's social links to normal roles and activities are reduced. This means helping the dying individuals find meaning in each day's existence when the sources that have provided meaning in healthier days are no longer available.1'1 As death approaches, the staff often is called upon to provide the patient with an opportunity to close relationships with significant others and to spend the final moment of life in a way that is meaningful to him. When the patient clearly has no family resources, this becomes an extremely difficult task.
The following study of patients who died within one long-term care psychiatric hospital highlights the pattern of care which is traditionally received by resource poor individuals. The results suggest alternative approaches to these individuals by members of the health care team who are often the final social link to those who must die alone. Implemenation of the salient findings could bring institutional care of these individuals closer to the level recommended within the widely accepted hospice concept.
This study involved a retrospective record review of all patients who died at the Veterans Administration Medical Center, Perry Point, Maryland, during a nine-month period in 1978. The Perry Point VAMC study site is particularly appropriate for the examination of services to the resource poor individuals. It is located approximately 40 miles northeast of Baltimore, Maryland, and provides long-term care to a population who reflect a mixture of medical and psychiatric problems. The clinical picture is clearly an aging group requiring extended care for complex medical, psychiatric and social needs. The study question was whether characteristic patterns of long-term care could be identified that might influence an alternative hospital program for those who experience a terminal illness.
The study group consisted of 51 individuals, 49 males and 2 females. All except 4 were Caucasian and the average age at the time of death was 65 (S.D. = 14.63). The average length of time spent in the VA health care system by this group was 15 years. Only 2 had been employed within the year prior to death, and 59% had no record of employment since their admission to the VA system. Sixtyfive percent were non-serviceconnected, that is, their disabilty was not directly attributable to military combat, but they were eligible for health care benefits if no other resource was available. Sixty-one percent of the study group were rated incompetent to handle their finances at the time of their final admission. In essence, the study group is characterized as long-term dependent with a variety of psychiatric needs that have persisted prior to and after the onset of the final phase of life. Data collection instruments were assembled to abstract major variables from the group 's clinical records including: demographic data, types of illnesses, length of stay within the service units, frequency of treatments and amounts of social support provided. The study results are a secondary analysis of the data and are intended to bear directly on the improvement of services to the dying elderly.
Limited Linkages - An analysis of the data revealed that the majority of patients in the study were notably lacking in family and friendship links through whom they could receive emotional support. Two-thirds of them were listed as married at the time of their last admission. The records for these patients contained no information about extended family networks or friendship links, and though it is possible that these supports were present, the lack of documentation is a strong indication that they were not considered in the overall treatment plan. Documentation of family support in situations where the patient had a spouse or other close relative was virtually absent from most clinical records. It also followed that the older the patient, the longerthe hospitalization and the more limited the network of family social support.
The individuals seen in these data are clearly resource poor in the area of links to a family, home, or community. This detachment from the social structures may be explained in part by the lack of family and associated roles, the geographic location of the health care institution, and the deteriorated health state that preceeded the need for terminal care.
The individual who is not linked to the community via a family unit is much more likely to relinquish other social roles, (i.e. worker, friend, citizen) when chronic illness strikes. He relies upon institutions such as nursing homes, mental hospitals and community care residences for total care. In these institutions, his major role is that of patient and the meaning in each day's existence is generated through that role. For such individuals, the links to society are through the staff in the institution where care is received and through the other patients who reside at the facility. In most instances when the resource poor individual is transferred from one institutional setting to another, or from one unit to another within the same institution, his associations with the staff and patients sharply decrease and often become extinct.
An affirmation of these limited linkages is seen on Table 1, which provides an illustration of the routes taken to the site of terminal care. Only 33% of the study group came directly from their own or a foster care home to the Perry Point VA Medical Center where they received terminal care. The remainder (67%) were either transferred from another hospital or from another unit within the medical facility.
The paucity of family and friendship links identified among this resource poor group may be further explained by the once common practice of locating institutions for individuals with chronic illnesses in the country, away from the metropolitan congestion and services. The effect of such decisions further reduced the maintenance of family and friendship resources since traversing the distance to the relatively isolated health care institution was difficult, if not impossible as people become older. As an example, the average distance for the study group's nextof-kin from the place of residence to the hospital was 55 miles. Public transportation routes are generally non-existent to many rural hospital settings and bring a would-be visitor to within only two or three miles of the hospital. For the 66% in this study who had been in an institution for many years, the major linkages to home and community had long been severed.
While there was little evidence to indicate that any personal linkages were acknowledged by the health care staff providing either preterminal or terminal care, the study group demonstrated a well-established connection to VA health care as a system. There was an average of 9. 1 separate admissions to VA health care facilities with fully one-third of the population listing their first contact with the VA system as an admission to the Perry Point Medical Center. Eight percent had never been admitted to a VA facility other than Perry Point reflecting a pattern of health care consumption not atypical in our society.
Admissions to health care facilities, among the general population, increase with the age of the users and the majority of individuals appear to have multiple admissions prior to death. These current data may very well suggest a drift phenomenon whereby individuals gravitate to one health care setting as the stresses of aging and health care problems become protracted. As different illnesses reinforce one another, there occurs a resource selection process on the part of the individual who will eventually become completely dependent upon a particular institution.
Aging often involves a higher incidence of chronic disease and a multiplicity of illnesses, which results in a population at higher risk for hospital care. With no family or friendship resources there is tremendous difficulty in approaching death without personal links to a meaningful past. The willingness of chronic care facilities to acknowledge a responsibility for providing meaning in the residents' daily life is evidenced by the presence of activity programs, colorful decor and the recognition of holidays, planned outings, etc. However the acknowledgement that the resident is frequently totally dependent upon the institutional personnel for this linking is not as evident. Indeed, in many settings, the staff responsibility appears to end with the scheduling of linking opportunities. Little or no attention is given to whether the resident is capable of obtaining meaning in each day's activities given the format of activities and residents' changing conditions.
TRENDS IN HEALTH CARE PROVISION
The staffing pattern in long-term care facilities may provide one answer to improving the extent to which residents spend their pre-death days or years in a meaningful way. Currently, care is provided by staff who are assigned responsibility for a group of patients over periods of time that may range from a few hours to a week or month. A pattern prevails whereby all staff members are responsible for the care (usually heavily defined as physical) of all residents but no one is responsible for total care of a specific resident. The primary care nursing model has been slow to reach the long-term care facility, even though it represents one means of providing more comprehensive care without altering the cost to the institution. In the long-term facility, the primary nurse or care giver's focus could acknowledge the role of a significant other and a link to the social system. Coordinating efforts would be directed toward seeing that these roles meet the individual needs of a patient.
Impaired Physical and Mental Ability - The study also revealed that the group became increasingly resource poor in physical and mental resources as they approached death yet the records provided little evidence that these diminished resources were appropriately acknowledged in the treatment plan.
An examination of the primary problems recorded for the study group at three time intervals (the first admission, the last admission, and the time of death) showed a distribution typical of aging individuals who are ultimately treated for a diminution of physical functioning. More importantly it showed the trend of traditional medical care for the dying person. Since the medical record system is of the problem-oriented type, a primary problem listing was assumed to be indicative of the treatment focus. In terms of a problem review at three points in time, Table 2 clearly shows the trend in health care provision at each of the three stages.
At the time of first admission the presenting problems were almost equally divided between medical and psychiatric categories which reflects the long-term character of the patient population. At the time of last admission, only 35% of the patients had their primary problem recorded within the psychiatric classification.
At the time of death, all problems fell within the medical classification as might be anticipated. It is important to note that within the medical problem listing, most were chronic disease processes and consequently depleted the physical resources of the patients. The shift in treatment focus from psychiatric to medical concerns is very much congruent with current health care approaches, but may not always be in the best interest of the patient.
In reviewing the psychiatric problems noted in the clinical records, most were of a chronic nature and represented processes which resulted in limitations of the individual's ability to function cognitively. Though these problems were not reflected to the same degree in the list of problems at last admission or at death, one can assume that they continued to be present in the patient and resulted in his facing a terminal phase of life with both restricted physical and mental resources. The restriction of mental resources in the dying patient increases the risk of being denied opportunity to express his wishes for terminal care whether it be in the form of a living will or informal conversation. In addition, the opportunity for leave-taking may also be denied the patient whose mental functioning is impaired.
The individual whose limited physical and cognitive resources are also accompanied by limited interpersonal resources presents a major challenge to care givers. For they are not only faced with the task of providing significant others and links to the larger social system through which the dying person may find meaning in life and an opportunity to prepare for death, they must also provide this care within the physical and cognitive capabilities of the dying person. In essence, the added challenge is to provide the services when the patient is capable of utilizing them. The episodes of mental clarity or physical strength become a major consideration in planning and providing care. Unfortunately these episodes of increases in the patient's ability to utilize health care services do not always coincide with the availability of such resources. Specifically, the health care staff are most available to the terminally ill patient when he is in need of and is receiving physical ministrations. This may be the time when he is able to relate his concerns about his life and impending death, since the physical treatment depletes his already limited physical and cognitive capabilities.
Response Patterns of the Hospital - Within a population known to be resource poor and familiar to a specific health care center, one could anticipate that the health care resources utilized during terminal illness would reflect an attempt to augment ancillary or allied services to the individual. A review of the services documented for the study population, however, revealed that this augmentation did not occur. It should be noted that as is common in acute care settings, the medical treatment is well documented while other types of services rendered often go unrecorded. In addition, the current organization of hospitals into specialized units structured to meet specific patient needs often makes it necessary for the patient to be shifted from one unit to another as his condition improves or deteriorates or as different types of problems are encountered. While these shifts or transfers may be therapeutic in terms of treatment for a specific problem, they place additional stresses on the individual.
Among the most common stresses for individuals are the demand to establish relationships with a new group of people, insure that information is transmitted to the new staff group, acquaint themselves to a new set of physical surroundings and establish a means of obtaining and interpreting information about the treatment received relative to their condition. For the person with family and friends available, this control over one's life management is not totally given over to the hospital staff, though it frequently becomes an arena of conflict as the institution strives to prolong life while individual and family struggle to face the impending death.
Though the extent to which ability to maintain control of life and environment are not clearly reflected in the medical record, they can to a great extent be inferred. Of the 51 patients studied, 20% died in the same location and on the same day when their condition merited entering their name on the "seriously ill" list. Entry of an individual name on the "seriously ill" list is a medical determination that the patient has a high probability of dying in the very near future. The individual's next-ofkin is notified regarding the serious nature of the medical condition. For these individuals, the rapidity with which they reached death minimized the need to adjust to different locales within the institution, but it also reduced the opportunity to prepare for death. The 80% who survived two or more days after they were identified as "seriously ill," had the potential to be transferred during their course of illness. The average number of transfers for this cohort was two with 66% of these patients treated in more than one location during their last admission and 45% treated in two or more locations.
Most patients were admitted to the general medical unit or the intensive care unit. The lack of ancillary services, coupled with the stresses encountered in multiple transfers documented for this group can clearly produce reactive effects among resource poor individuals. Personal buffers are limited and stresses more pronounced. Coping takes on a special significance and involves something more than good quality physical care.
The resource poor population whose terminal care was explored in this study is not unlike nursing home residents or elderly individuals who live alone and receive terminal care in an acute care institution. Such individuals present a challenge to health care providers to develop treatment regimens which acknowledge their lack of physical, psychological and social resources, yet at the same time meet their needs to maintain some control over life, engage in leavetaking behavior with significant others, find meaning in each day, and spend the last moments of life in activities that are meaningful.
If one may generalize from the findings of this study, it would appear that the resource poor individual - especially those with chronic mental histories- have needs for the presence of supportive resource persons during periods of mental alertness with whom they can express concerns about impending death.
Even further, there are clear needs for someone to preserve the power for the patient to direct his own care and have his wishes carried out when he is no longer able to express them. Traditionally when such needs have been identified the nursing or social work staff have assumed responsibility for the establishment of plans to meet them. These plans require considerable expenditure of time to establish and maintain a relationship through which all the health care staff can work to provide individualized care for the dying patient. Many institutions have been unable and/or unwilling to underwrite the cost of such services to the majority of terminal patients. Thus, if the resource poor person is to receive a higher quality of terminal care, ways must be found to provide it without placing further financial burden upon the care-giving institution. An expanded use of the Primary Nursing model within nursing homes and other long-term facilities has already been suggested. Other approaches to care might include the consideration of expanded potential population to serve as significant others, and the formalization of care directed toward preparation for death through modified record systems.
Identification of Significant Others - Traditionally it has been suggested that staff in a terminal care site serve as a significant other despite the fact that they were not known to the individual priorto the presentad mission. Since most individuals come from a setting where they have even some social connectedness albeit minimal, it would seem reasonable to look for retaining links with a significant other from that setting. With creative use of telephone communication, a supportive link could be maintained that did not require frequent direct contact between the significant other and the terminally ill individual. Volunteers also represent a pool of potential significant others.
Monitoring the Movement Toward Death- The population in the present study died with little record of the psychosocial pattern they followed in the terminal phase of life. How or if they progressed through the stages of anger, denial, grief and acceptance is not known. Nor is the role of the health care staff in facilitating this progress known. For very few members of the study group were there any records that visitors were present. In no case was there an indication that leave-taking occurred with a significant other. While it is highly probable that the health care staff were t he rape u tica Hy involved with the terminal patient in areas other than providing remission of symptoms and prolongation of life, the absence of such care in the clinical records invite questions about the quality of the care. Many patients clearly lack the physical, cognitive, and social resources required to seek essential psychosocial services. One vehicle for such communication is the "death history." Establishment of a record on which there is pertinent information about the patient such as: significant others and their available hours, the concerns of the dying individual prior to the well known stages of dying, patterns of increased and decreased cognitive functioning, ect. .., would provide continuity of care and individualized treatment.
The responsibility for establishing and maintaining activities to improve care of the dying patient is not limited to the domain of any professional group. In some settings it may be assumed by the social work staff, in others the nursing staff, in others by the chaplain and in still others it may be a shared responsibility. Regardless of which professional group holds responsibility for monitoring the predeath activities, all members of the health care team can make valuable contributions and can make them more effectively when the care is organized and coordinated. The resource poor patient can become resource rich when the health care team assumes its responsibility for the full range of terminal care.
- 1. Kastenbaum RJ: Death, Society and Human Experience, ed 2. St. Louis, The CV MosbyCo, 1981.
- 2. Castles MR. Murray RB: Dying In An Institution: Nurse i Patient Perspectives. New York, Appleton-Century-Crofts, 1979.
- 3. Butler RN: Why Survive? Being Old In America. New York, Harper & Row, 1975.
- 4. Elkowitz EB: Death and the elderly patient. Geriatr Soc 1978; 26(l):36-38.
TRENDS IN HEALTH CARE PROVISION