Try as we may to ignore or deny it, death is a common denominator for all living beings. It is an inevitable and universal experience that should invite a degree of serenity. In reality, this experience causes a hesitance in most people to face the end of life's cycle. Vocalizing our concerns about death is still generally taboo as a topic of conversation in our society. Lay and professional publications deal with a variety of topics from personal experiences with death to the care of the dying patient, but the majority either imply or directly state the ineffectiveness of health professionals in providing such care.
Death is primarily experienced at the end of a long lifetime as evidenced by 70% of deaths registered in the United States affecting persons 65 or more years of age. The process of dying is often a prolonged experience for the patient and his survivors. The isolation of the dying person from his familiar home surroundings is common in our society, with the place of death frequently being hospitals or nursing homes.1-4
The decision that the dying person enter an institution is often an unhappy one for the elderly person and his/her family. The United States has been through a rapid evolution of mores in recent years involving an almost obsessive worship of the young, the new, and the different. America's system of values, which is characterized by occupational achievement, emphasizes activity, work, practicality, efficiency, and progress. These values are of a "functional-having" outlook rather than a "being" dimension.5 As a result, elderly people feel useless and unwanted. They find themselves without functional roles to justify their social future and without self-concepts tolerable to themselves and acceptable to others. At times, because they feel useless, the obvious way to legitimize their status is to be useless through incapacitation of illness. The sick role provides an individual with a defense against a shame engendered by desertion but only for a short time. If the illness is prolonged, relief is sought by the elderly person, children, and relatives. The patient is usually sent to a hospital or nursing home and seldom leaves because there is no other place to go. What was once a way to legitimize their status has now become a permanent banishment of the elderiy to institutions.
Further evidence of evolving mores was demonstrated during the writers' interactions with groups of older persons wherein two major fears were consistently expressed: (1) a fear of young people and (2) a fear of health caregivers, which included nurses and physicians. Young people were feared because of their lack of interest in the elderly and the distinct possibility of personal injury, theft, or damage to property. . ."young folks just don't care for us older people anymore." The health caregivers were feared because of possible rejection or abandonment. . ."I'm old and useless. They don't want to take care of me. They don't care whether I live or die."
Research indicates that these fears are valid as elderly persons die in institutions. In fact, a cloak of secrecy was found surrounding the dying patient by Glaser and Strauss6 that blocked all meaningful interactions with and interventions for the patient. The pattern of disinterest and rejection of the dying patient was found by Sudnow7 where many patients in the hospital were found dead and unattended. In part, this inattention was due to the tactics of the personnel, who were attempting to minimize the disruption of their other ward responsibilities. Similarly, Gottesman and Rourestom8 in more than 27,000 observations noted that only 23% of the residents were observed receiving any nursing contacts at all. Sudnow9 found disinterest a real danger in the institution as the staff began to treat the dying person merely as a body before death occurred. Furthermore, the older the person, the more likely this mechanism of disinterest or rejection seemed to occur.
Since the nurse is the health caregiver most often in attendance, he/she is frequently perceived by the patient and his family as a helper and may be in a position to more effectively aid the patient in coping with his pending death.10 Ramsey" discussed "premortem care," indicating there is a duty, a categorical imperative, to never abandon care. This includes assuring the person that they are not alone, that others are aware they are dying and will be with them during the dying process while providing the nursing care indicated in the changing situation. The nurse can effect these changes only if her attitude toward the aging person, terminal illness, and death are directed toward listening, observing, understanding, and assuming the role of a helping agent to the person facing the dying process. To be this type of helping person, three distinct components are involved: the patient, the family, and the nurse herself.
Death is an individual's second most important moment in life, the first being his birth. To some individuals, it is the completion of a life process. To others, it is the transition to another life, but to all it is a moment more significant than any they have previously experienced. The dying person is very intent on taking cues concerning his progress from all environmental surroundings. He determines his progress toward death by the actions and words of those surrounding him; hence, all interactions between the nurse, family, and patient should continue with the same vigor and quality as previously engaged in when continued life seemed a possibility.
Physical care of the elderly person during the dying process should reflect hope not despair or an attitude of abandonment. For example, routine positioning and skin care, careful dressing changes, special diets, continued ambulation, monitoring of all systems for adequacy, etc, reflect through touch to the patient "you are with me in this process." Also, regardless of the level of consciousness of the patient, verbal communication should be continued as much as possible with every action performed in direct contact with the patient or even while tasks are performed in the room around the patient. An individual defines himself as something significant only when he is spoken to and handled as if he were a person. Decreased action or interaction with him transmits cues that he somehow is becoming less of a person and not worthy of attention or other considerations that he received when there was a possibility of improving his health status. In essence, the dying older person should be treated as a worthwhile person with feelings and emotions. Irregardless of age or health status, one needs to feel important, not worthless and a burden to both relatives and health care personnel.
This approach of consistent action and interaction is not easy for the nurse who must plan with great care to meet all the needs of the dying elderly patient. This implies she must maintain her motivation toward excellence in care both physically and psychologically in all interactions with the patient. Such motivation is maintained against all odds with the prevailing negative societal attitude toward both aging and death. If we look at those things we do and say to an individual as being the cues they correlate with life, dignity, and hope, then the nurse will plan with delicate care the approaches used with the dying person. Every action and word of the caregiver should indicate that the patient is an important person who has life and commands not only respect but, also, the most carefully planned nursing interventions.
The dying person not only obtains cues from the health caregivers about his self -worth, but also from other persons interacting with him. Of particular importance is the family and friends who are with the individual during the dying process and, in most instances, are his major support group. Often the family has many feelings of anger, guilt, fear, and identification with the person who is dying. At this time of crisis, there may be several disparate fears experienced by the family. There may be general fear of death itself as a personal threat reflected in the dying person, or, if the family has had no prior experience with death, the dying process itself becomes fearsome. If the dying person has been the major source of financial support, relatives may fear a future of distress. Also, if the dying person has been a keystone in the family unit, there may be a fear of the pending loneliness and permanent loss of the loved one. Lastly, there may be a fear this aging person may live and be a burden to the family. Coping with the family's response, which may be considered either underreacting or overreacting, is a major problem for the caregiver.
The family may avoid the dying person by neither speaking to nor coming close to the dying person and may never even appear at the bedside. A gentle explanation to the family of what the dying person is experiencing and some simple specific actions to take may relieve the helpless feelings of the family in their goal to support the dying person. It is important for the family to understand that the patient uses all the cues in his environment to determine not only his health status but whether or not he is still a significant member of the family. This significance will be identified by such things as family members touching him and talking to him in the same way as they have in the past. The patient very carefully picks up cues if people are staying away from him or not communicating with him.
The family may think that because the patient is at times semiconscious he cannot hear, or they may feel uncomfortable in communicating with the person who cannot consistently respond to them. An explanation by the nurse can be very helpful to the family in understanding how their roie oí concern can be exhibited by actually touching and communicating with the patient in the same way they have in the past even though at times the patient may not respond to them. The family -patient interaction in the past may have been negative due either to their own nonacceptance of the aging person or the elderly person's own difficult temperament. In this instance the nurse may help the family evaluate the past situation and determine the most appropriate communicative behavior to use.
Sadness, and even tears expressed, are normal responses to the possible loss of a family member and are perceived by the dying person as concern for him as a loved person. It should be emphasized how very supportive communication, both verbal and nonverbal, is to the patient as demonstration of his significance to the family. The main thing expected by the dying person at this time is love and concern.
The opposite problem is overreacting, which can be as harmful to the patient as underreacting. This is apparent when families tell jokes or talk in loud voices to each other over the dying person about very inappropriate matters. This type of behavior forces the patient to assume that he no longer really exists to the individuals around him, and, in fact, he may wish himself out of the scene by withdrawing even more. Frequently, the family does not intend for this to occur, but rather is trying to normalize the situation for itself, and consequently overreacts.
Most families welcome information from the nurse that should include the following: (1) the types of things the patient is experiencing, (2) the possible overand under-reacting behaviors and the meanings these behaviors convey to the dying person, and (3) the specific kinds of family responses including appropriate words, actions, and suggested tasks they could perïorm that would he most supportive to the dying person.
When planning with the patient and family, one or the other may wish to have supportive spiritual care. The nurse should include information concerning channels of spiritual support when advising the family. The nurse can help the family and the patient attain the spiritual support they need in a way that is calm and helpful to them rather than fearsome. Almost all persons in the dying process gain comfort from interactions with their spiritual director who should be summoned as soon as indicated by the patient or family. The emphasis by the nurse should be on the strengthening factor" that comes from support given by a spiritual director.
Reactions of the Nurse
The nurse as a central health caregiver has a key role in providing quality care at this unique time in a person's life. In this key role of facilitator, she personally ministers or directs other caregivers to meet the needs of the dying person and their survivors. To be effective in this key role, the nurse must first understand her own beliefs, attitudes, and fears related to both the aging process and death.
There are many things that purport against the nurse developing a positive attitude toward aging and death.
As Dr. Kubler-Ross so aptly put it, "If all of us could make a start by contemplating the possibility of our own personal death, we may effect many things, most important of all the welfare of our patients, our families, and finally our nation."12 It follows that nurses who tend to deny their own mortality or feel angry about it may likewise avoid or abandon the elderly dying patient. Nurses who confront and understand their own mortality are more comfortable helping individuals through the dying process.
A very special book that may be helpful to nurses is Gramp, which depicts an aged man's dying experience narratively and pictorially. The family supports this dying man in his familiar surroundings with honesty and sensitivity. The children, grandchildren, and greatgrandchildren share Gramp's dying experience with extraordinary warmth, love, and naturalness. These individuals have learned to accept their own mortality by sharing Gramp's dying process.'3
If the nurse has been providing care for the dying patient for an extended period of time, there is an attachment formed. Consequently, there are some factors that may hinder the nurse's effectiveness in supporting the dying person: (1) the nurse may view death as a failure of medical and nursing treatment rather than a natural process through which all persons must pass, or (2) she may have a basic fear of aging and death and of the elderly person who is dying. These fears may provoke either of two types of reactions by the nurse. First, she may disregard responsibilities normally included in the care of every patient such as backrubs, turning, positioning, skin care, fluid intake, mouth care, etc. Avoidance of these duties would serve as cues to the patient that he is not being cared for and in some way is not as significant a person as he previously had been. In a second type of reaction, the nurse may become too solicitous in her care of the patient until he feels that there must be something drastically wrong since he has never before received this type of care. In the patient's mind, only emergency situations bring on the type of physical and communicative behavior demonstrated by an increased amount of activity with high pitched voices and stronger touch behaviors.
The nurse giving consistent concern and attentive physical and psychological care, will comfort the person who is dying. This type of care will give him the feeling of security that he needs while experiencing a process that is unknown and possibly fearful to him. The dying person may give cues indicating he wishes to discuss his pending death. He only expects a receptive and nonjudgmental attitude from the nurse that allows him to both express and discuss his thoughts and feelings about the dying process and at times to pray with him about it. Because this type of interaction may be uncomfortable for the nurse, changing the subject or avoiding such conversation is often the approach chosen. Listening in an attentive, calm manner and at times rephrasing the person's words to help him express his real thoughts frees him to communicate his great concern about the dying process. This sharing of feelings about his pending death may bring comfort to him or at least ease the fear and uncertainty he may be experiencing.
Since the dying process is often prolonged, requiring a great deal of physical and psychological care for the patient, the nurse expends much energy with the patient during this time. It is natural that she might experience fatigue and have difficulty controlling her emotions, perhaps even feeling angry with herself or others. At some point in time, as she faces her own mortality, she will need to verbalize her anxieties, grief, and concern for this particular patient and receive the support and empathy of her peers. Discussion among caregivers about the mystery of death may bring into focus her own death and give perspective to the care of the dying patient and the supportive role needed by them.
In summary, old age is not revered in America and the topic of dying is usually avoided. There will need to be a shift in the balance if the attached stigmas to aging and death are to be erased. "Agism" is the same as racism in its destructiveness, but a greater problem than any other kind of prejudice because it eventually effects everyone. One of the greatest assets possessed by nurses in situations involving the death of an older person, is the ability to respond sensitively to his wants and needs. This is an innate ability of some individuals, but it may be learned by all. Hopefully, all caregivers will gain the ability to respond with the appropriate nursing interventions and empathy to the dying elderly person, his/her survivors, and other caregivers.
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