Hospice nursing—Reaping the rewards, dealing with the stress

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Hospice Nursing-- Reaping the Rewards, Dealing with the Stress Personal growth is the greatest reward; a patient's death the worst stress only if the nurse is denied time to grieve. VIRGIN IA MAJOR THOMAS The rewards of hospice nursing are many and they are important. Those I will describe are drawn from three years' experience in a home hospice program based in a visiting nurse association. Some of these rewards are un- doubtedly to be found in any hos- pice setting. There are now many different settings, for the hospice movement in the United States has grown by leaps and bounds since the New Haven Hospice (now The Connecticut Hospice, Inc.) was founded in 1971. Ten years later the movement included 201 "pro- viding" hospices as voting members of the National Hospice Organiza- tion, and many hospices not yet af- filiated with the NHO( I ,2) . Individual hospices now come in a variety of forms: wholly volunteer programs, home services, free- standing buildings, inhospital pal- liative care units or hospice teams, continuum-of-care subacute facili- ties, and combinations of any two or three(3). Nursing functions and responsibilities may vary according Virginia Major Thomas, RN, MA, is the hos- pice clinical specialist with the hospice team, Home Health Services of Dallas, Inc., Texas. to the organizational form. Nev- ertheless, there are many common- alities. All evolve from the defini- tion of hospice. Hospice is not a building--al- though it may include one. Rather, it is a program to provide comfort and support to the dying and their survivors, and respect for their au- tonomy. It involves a rapidly ex- panding body of knowledge, a group of practices that vary and change, and a complex of philoso- phy and attitudes. In this program, the nurse's role is pivotal and ex- tremely satisfying. Hospice Philosophy A principal reward of hospice nursing is the opportunity to work in a health-care delivery system founded on the hospice philosophy, which holds simply that dying is a natural part of life. This is the basis for all hospice care and for the first two NHO Standards, "Appro- priate therapy is the goal of hospice care," and "Palliative care is the most appropriate form of care when cure is no longer possi- ble"('4). Care of the dying person and the family is substituted for the prevention of death. Thus care con- tinues but with its purpose'redi- rec ted- to physical, psychological, social, and spiritual comfort. It is never true, until the patient dies, that "there is nothing more we can do," and even after the pa- tient's death much care is needed by the family and friends. Nursing on the foundation of hospice philos- ophy, unlike the coronary care nursing described by Price and Bergen, does not embroil nurses in "distressing feelings about their ca- pacity to meet the demands for ab- solute control that they feel death imposes on them"(5). Hospice nursing provides the kind of care that caused Walker to write, "Hai led as a new approach . . , hos- pice is as old as nursing itself. It is, for nursing, a symbolic return to its roots. Humane and compassionate care, one cherished ideal which has motivated nurses for centu- r ies . . . "(6). Hospice nursing differs signifi- cantly from much other nursing be- cause of the patient's condition and the hospice emphasis on respect for patient/family beliefs. Nursing in hospice is less centrally involved with a medical regimen. It does not attempt to reinforce the patient's motivation to follow a curative (or even a palliative) medical plan or to move toward independence, with resumption of work, social roles, and responsibilities. Hospice nursing involves accep- tance of the patient's and family's decisions regarding care to a far greater degree than in most other nursing Situations. The hospice nurse helps the patient to clarify his or her desires regarding dying and to realize those desires. Meeting such requirements constitutes one of the biggest challenges and pro- fessional rewards that hospice nurs- ing can offer. Increased Nursing Autonomy Another reward is the fulfillment that comes from having greater- than-normal autonomy, more op- 22 Geriatric Nursing January/February 1983 The desires of the patient and family take precedence in the care plan. The hospice nurse helps clarify those wishes. portunity to practice independent- ly(7) and to chart new courses and set precedents that will influence 9 hospice care as it develops across the U. S.(6). Usually the nurse is the case coordinator for the patient/family unit. If the patient is at home, the nurse visits within 24 hours of re- ferral, which can be made by any- one. The nurse has recommenda- tions for the medical regimen usually from the attending physi- cian, but sometimes from a special- ist. Patient and family approve of the visit. Assessment includes per- forming as complete a physical ex- amination as conditions allow, to establish baseline data, and record- ing all medications with their dates, dose, frequency, and route. The nurse studies the physical environment for possible problems or needs. A hospital bed may al- I'm Grieving for You Nurse, won't you tell them Their voices are clear? My lips will not speak But my ears can still hear. They beg of the doctor "'What else can you try? More medicine, please We won't let him die." He prescribes for my body While treating their pain. I look forward to death But their hopes still remain. My sons and my daughter I f you only knew, While you're crying for me I'm grieving for you. Rita A. Fleming, RN ready be in the home or on order, but sometimes it has not been con- sidered and the nurse needs to or- der it. Sometimes it is not wanted by the patient or family and there- fore is not ordered. The patient's and family's desires take precedence in the care plan; they are the most important mem- bers of "the team." These are, after all, the patient's and the family's last days together; the hope is that this time will be lived as they wish. Finally, the nurse becomes ac- quainted with the patient/family attitudes, moods, behaviors, and the family dynamics. Although pa- tient and family have agreed to home hospice service and presum- ably understand that it is for the dying, the physician may or may not "have told" the patient/family that the illness is terminal and they Geriatric Nursing January/February 1983 23 may or may not have heard. The hospice nurse is exquisitely sensitive in dealing with their knowledge and feelings about the impending death, never more so than during the first visit. Appro- priate measures are listening, al- lowing patient or family to take the initiative, and dealing with feel- ings. Doing so will keep the nurse from being placed in a difficult po- sition because a physician "won't tell." As case coordinator, the hospice nurse relies heavily on other mem- bers of the hospice team. As maker of referrals, the hospice nurse de- termines the need for a medical so- cial worker, home health aide, physical or occupational therapist, member of the clergy, and possibly a volunteer, and then secures pa- t ient/family assent. Sometimes the physician has requested the ser- vices of other team members. If not, the nurse can recommend their use to the physician. But a patient may refuse any service. Controlling Symptoms The nurse's professional inter- ventions include alleviating pain, nausea and vomiting, dyspnea, anorexia, constipation, weakness, dehydration, cough, diarrhea, and many other symptoms. Symptom control is usually the first task. For most patients, physical discomfort can be reduced to a tolerable level if not completely eradicated. However, this is possible only if the patient has been referred for hospice care at least a week and preferably several weeks or months before death, and only if the physi- cian prescribes appropriately. Such prescribing is increasingly common as more is learned about the medi- cations used in the hospice ap- proach to symptom control. As part of symptom control, an- other major duty of the hospice nurse is to teach patient, family, es- pecially the primary caregiver, and home health aide (if one is present) the regimen for each drug. It is sometimes difficult to persuade them that analgesics must be taken preventively. When 48 hours of around-the-clock dosage eliminates pain, many patients will stop taking the analgesic. Usually, when pain then returns, the lesson is learned and the analgesic is taken regularly to anticipate and prevent pain. A chart showing the dosage and schedule may help the family ad- minister medications accurately. Occasionally patients refuse ade- quate analgesia, not so much from fear of addict ion--an irrelevant fear that a hospice nurse can usual- ly dispel--as from a belief that tak- ing more medication indicates that death is closer. Requirements For Hospice Nursing 9 a thorough knowledge of anato- my and physiology, and considerable 9 familiarity with the pathophysiology of a number of diseases 9 great skill in physical examina- tion and in various nursing procedures such as catheterization, cotostomy and traction care 9 considerable knowledge of phar- macology, particularly of analgesics, narcotics, antiemetics, tranquilizers, cancer chemotherapy, antibiotics, hormone therapy, steroids, and car- diotonics 9 skill in using psychological princi- ples, in both one-to-one and group sit- uations 9 great sensitivity in human rela- tionships 9 knowledge of measures to com- fort the dying in the last hours, and personal characteristics such as stamina, emotional stability, flexibility, cooperativeness, and a basic joie de vivre--a philosophy or faith. The nurse teaches the family pri- mary care provider how to give bed baths, make transfers correctly, do colost6my and skin care, turn and position the patient every two hours, and maintain nutrition and hydration. Having given their rela- tive physical care is often a great comfort to family members before and after the patient's death. The nurse also supervises the home health aide in hands-on care and teaches any new procedures. There is no margin for diagnostic laziness, in either medical or nurs- ing diagnosis. The condition of a patient during the nurse's first home visit may differ vastly from that person's condition during hos- pitalization or on the previous of- fice visit. A cancer patient on moderately strong narcotic analgesics in the hospital--for example, meperidine (Demerol) 75 mg IM q3h- -may go home with a prescription for ace- taminophen (Tylenol//3) 1 to 2 tab PO q6 to 8h. As a result of taking that less potent analgesic by a dif- ferent route and schedule, the pa- tient may have increased pain, be unable to express any need except pain relief, and be causing the fam- ily considerable anguish. The hospice nurse first deter- mines whether the Tylenol has in- deed been given as prescribed, then assesses the pain: its location, qual- ity, time of occurrence, intensity, and duration. The nurse is always alert to probable causes. The termi- nal illness itself may not cause all the patient's pain. Cystitis or ar- thritis, for instance, may be respon- sible. The nurse then informs the phy- sician completely but concisely of the situation and may request a prescription for a stronger analges- ic, such as hydromorphone (Dilau- did) 2 to 4 mg PO q3 to 4h. Dilau- did, because it is usually longer act- ing than meperidine, is more satis- factory for home use, and oral med- ication is easier to give at home and easier for the patient to take. The nurse then visits to deter- mine whether the new prescription reduces pain sufficiently, and to evaluate side effects. The prescrip- tion should be flexible enough so that the nurse can titrate the analgesic to the individual's need. As different dosages are tried the nurse coaches the principal family caregiver. Questions arise. Perhaps a terminally ill man sleeps exces: sively for two to three days after re- ceiving a new analgesic, which re- lieves discomfort that had persisted for 24 to 48 hours. Is the new med- icine "drugging" the patient? Is the dose too large? The frequency too great? Not necessarily. This man may simply be catching up on the sleep that his pain had prevented. However, if increased drowsiness 24 Geriatric Nursing January/February 1983 continues for four to five days or more, particularly if the patient would like to be more alert, the dose and schedule may need fur- ther adjustment within the physi 7 cian's orders. The hospice nurse is constantly called upon to judge the effectiveness and adjust the dosage of analgesics, antiemetics, tranquil- izers, and many other medications, in consultation with the attending physician or hospice medical direc- tor. With each patient the nurse an- ticipates the known and common side effects of each drug and teaches the patient/family to deal with them. For example, the consti- pating effect of narcotics can be prevented" by adding more rough- age and fluids, increasing exercise if possible, and perhaps by giving a "mild over-the-counter preparation like dioctyl calcium sulfosuccinate (Surfak) or dioctyl sodium sulfo- succinate (Colace). Hospice nursing calls for con- stant vigilance because a dying pa- tient's condition, both physical and emotional, changes frequently and radically. He or she may eat well one day, then complain of a sore throat and refuse all food and fluid the next. Examination of the mouth and throat may reveal candida, which, when discovered early, is easily treated. On the other hand, intermittent, sharp, excruciating pain in the tibia in a person with breast cancer may signal bone me- tastasis, and the nurse must consult the physician immediately. Pallia- tive radiation may relieve bone pain. The hospice nurse is alert for on- cological emergencies and such complications as hypercalcemia, spinal cord compression, superior vena cava syndrome, hypokalemia, fever, and bleeding. Any of these can shorten a life that otherwise might be extended and continue to be of high quality. The psychological status of the patient and family may also change frequently. The man who is crying freely with his family one day, mourning his coming loss and theirs, may several hours later be planning a trip to Las Vegas in three months or deciding to build a lake house next year. The hospice nurse listens, communicates hope- -but never false hope or l ies--and is present with the pa- tient, in whatever her or his state of mind, sometimes clarifying feelings for the patient, but with acceptance and without judgment. The hospice nurse is wary of as- sumptions about patients' attitudes toward death based on age, race, economic status, or any other fac- tor. It is not true, for example, that all older persons are more accept- ing of death than younger people. One of the least fearful, most peaceful, and "accepting" attitudes toward her dying was that of a 21- year-old woman whose lymphoma had been discovered two months af- ter the birth of her first child. She died when he was 10 months old, but she was grateful to have been relatively symptom free and able to enjoy her son, if only for a short time. Caring for her was both very stressful and extremely rewarding for the nurses. One of the most angry, bitter, and unaccepting patients was a "]9- year-old retired teacher who had a lifetime of considerable intellectual achievement and community re- cognition and a large, devoted fam- ily. Some of the elderly are content and ready to die. Others are resent- ful, fearful, or anxious to negotiate for a little more time. Dying, like living, is a highly individual matter. The hospice nurse is attuned to the individual attitude, regardless of age, sex, or any other factor. Many patients talk freely about their impending death and make fi- nal arrangements in a businesslike way. Others never mention death, although the listening nurse can of- ten hear them talking about dying or death in a tangential way. No at- tempt is ever made to force a pa- tient to talk or to force a patient to talk or to feel any way that is not his or her own way. It is, after all, the patient's dying and death, not anyone else's. The hospice nurse counsels the family in their grief, rage, frustra- The nurse is wary of assumptions about patients' attitudes toward death and dying. It is not true that all older persons are more accepting of death than younger people. tion, and guilt, and watches for any pathological emotional conditions or tangled family relationships that need the expert help of the social worker or other professional. Collaborative Aspects Another prime reward of hospice nursing is the privilege of working as part of a dedicated team. As Walker put it, "Roles are blurred and professional territory becomes unimportant in relation to the larg- er concern of hospice itself"(8). Team members share information, interpret it, and plan interventions together. This is absolutely essen- tial, for case coordinator though she is, the hospice nurse can rarely be thoroughly knowledgeable about Geriatric Nursing January/February 1983 25 9 the physical, psychological, social, and spiritual aspects of need evinced by patients and families. Ideally, all disciplines meet at weekly inhouse case conferences. Each discipline sheds its light on patient/family problems, helping every team member to assist pa- tient and family in making the best use of the time that remains to them(9). Of particular value are the contributions of the home health aides, who are sometimes in the house for the longest periods and learn much about the patient/ family situation that no one else knows. Similarly, volunteers pro- vide insight that is extremely help- ful to the whole team. Case conferences provide strong emotional support by allowing every staff member to express frus- tration, anger, sorrow, or satisfac- tion among peers who understand. Easing Death Seeing improvement in patient/ family life during the patient's last days is another satisfaction of hos- pice nursing. Part of this improve- ment is due to symptom control. From interviews with hospice nurses, Barstow reported that the one item unanimously considered a stress reducer was the success of seeing patients get symptom relief after cooperating with the nurse's suggestions(10). Psychological symptoms, too- - anger, regret, fear, and depres- s ion -are often alleviated by caring team members who listen, clarify, and empathize. So long as hospice nurses are willing to have their sound psychological advice refused by the patient and family, so long as they can accept the patient as the person who chooses to be who he or she is and to die as he or she wishes, nurses can realize true sat- isfaction. Part of the patient's improve- ment during the last days in home hospice care results from being in familiar surroundings amid beloved possessions, friends, pets, gardens. In fact, patients often come home from the hospital seeming to be at death's door, but within a week, re- lieved of pain and nausea, eating home-cooked food-- i f only a lit- t le - in familiar places with famil- iar people, they improve in appear- ance and mood and often live far longer than anticipated. Personal Growth The ultimate reward of hospice nursing, and the most difficult to accept, is the personal growth that results from interaction with the patient and family. Deep personal involvement does not occur with all patients and families, but as Friel and Tehan pointed out, "This is not a job carried out with professional detachment"(11). Working in the home, hospice nurses are in touch with some of their patients and families, espe- cially long-term patients, on a deeper level than nurses working in the hospital. The home care nurse is on the family's territory, where the family members are their natu- ral selves, living and dying as they really are. The nurse is there with them during one of life's sut~reme crises. Masks drop. Insight and a fuller understanding emerge, and with that a deeply caring, loving re- lationship. It is satisfying when patients and families express gratitud~ for the relief of distress and for sensitive honesty, but there is more to the re- lationship than that. There is the often unspoken recognition of kin- Working in the home, hospice nurses are in touch with their patients on a deeper level than nurses working in the hospital. The home care nurse is on the family's territory, where family members are themselves. ship, of human being reaching out to human being, sharing love but also vulnerability and mortality. With the patient's death, the nurse suffers a profound loss. Grief and pain inevitably follow. But grief and pain, however unwel- come, cause a growth in human- ness. Loss and pain are part of life. Joy and love are part of life. If the "yes's" of life are accepted, so must be the "no's." The dying teach the living to value the preciousness of every minute; they also teach the living that the hour draws near. Ul- timately, they teach the living that the black shadows of loss and pain throw the sunlight of joy and love into greater relief. The Stresses The principal stressors of hospice nursing have been well covered in the literature: feelings of helpless- ness about the inevitability of death; anger over patient/family conflicts that increase the patient's difficulties; lack of cooperation by physicians in alleviating the pa- tient's symptoms; guilt over failure to provide adequate care, whether or not the guilt is realistic; and sad- ness at the loss of patients who have become good friends. Yet, the worst stressor is not, per se, the death of a well-loved pa- tient. This becomes the worst only if the hospice nurse is not allowed 26 Geriatric Nursing January/February 1983 With the patient's death the nurse suffers a profound loss. Grief and pain inevitably follow. But grief, however unwelcome, causes a growth in humanness. The dying teach us the value of every moment of life. time to grieve. Team members who share the nurse's sorrow and give permission to grieve as the nurse wishes, whether crying openly or alone or not at all, can help begin the healing process. Beyond that, hospice nurses must insist on a policy whereby time off is arranged for the bereaved nurse, perhaps by having hospice-trained nurses work part time or on con- tract. When the grief is less severe, some of the bereavement time might be spent in other hospice- related duties, such as community relations, writing, or research. Time does heal, though terribly slowly. If allowed to move through bereavement at his or her own pace, the hospice nurse finds that loss and pain ultimat'ely lead to the courage to become involved again. When a grieving hospice nurse is involved in bereavement care with a patient's family, the nurse's grief is compounded; bereavement care is better provided in this situation by other team members. Some- times it helps if the family already knows them well, but support does not necessarily depend on this. Another severe stressor is failure to control symptoms. Team support is vital here. Physicians and phar- macologists can suggest alternative methods of symptom control, and all team members can help the nurse recognize whet,her some goals or expectations are unrealis- tic. However hard one strives to make it so, not every death will be "with dignity" or "good." The physician who is uncoopera- tive in the effort to control symp- toms cannot be let off the hook. Continual efforts, perhaps also by the family, should be made to enlist his or her help. When physicians order procedures that appear inap- propriate--hyperal imentation at a late date, for instance--hospice team members question them and ask the physician to present the ra- tionale. If a procedure is definitely against the patient/family wishes, it is the hospice nurse who acts as the advocate, politely but firmly. Another source of stress is too heavy a work load. To prevent frus- tration at the inability to give ade- quate care and, finally, total ex- haustion, the nurse's case load needs"scrutiny not only for the number of cases but also for the severity of each patient's condition, family complications, the distance traveled to reach each home, and the nurse's current emotional con- dition. Again, flexibility is the key and adjunct nurses may be the answer. Continuity of care is vital, so it would be desirable for every pa- t ient/family to become acquainted with several hospice nurses besides the case coordinator. Twenty-four-hour call adds to the stress. As Friel and Tehan say, hospice care is based on the team approach, but the nurse is responsi- ble to coordinate care, and no other shift takes over when she or he leaves the home(12). This is the best argument for arranging at least night and weekend coverage by nurses other than hospice staff nurses. The nursing supervisor, home care coordinator, or trained adjunct nurses familiar with the patients and with access to their re- cords could be used. When the hos- pice nurses go off duty, they need freedom for the other people and activities in their lives. 9 Central to reducing the stress of hospice nursing are, first, a suppor- tive administration, committed to hiring mature, experienced nurses and other team members; and sec- ond, team members who are re- sourceful in trying to realize the goals of hospice but able to recog- nize their limitations and the limits life imposes. It is most helpful if underlying all our efforts is the conviction that, despite all its frus- tration, pain, and sorrow, life is good and it is good to be alive. Then hospice nursing is an immensely re- warding experience. References I. Membership report. IN Annual Report, 1981. McLean, Va., National Hospice Organiza- tion. 2. Martin, M. C. Hospice care upda!e: many questions still to be answered. Hospitals 55:56-60, May 16, 1981. 3. Davidson, G. W. Five models for hospice care. QRB 5:8-9, May 1979. 4. National Hospice Organization. Standards and Accreditation Committee. Standards of a tlospice Program of Care. 6th revision. McLean, Va., The Organization, 1979, pp. 3,6. 5. Price, Trcvor, and Bergen, Bernard. The rela- tionship to death as source of stress for nurses on a coronary care unit. Omega:J.Death 19)'- ing (Baywood Publishing Co., Farmingdale. N.Y.) 8(3):232, 1977. 6. Walker, M. L. Current concepts of hospice 9 care. J.Nurs.Care 14:13-15, June 1981. 7. Barstow, Janice. Stress variance in hospice nursing. Nuts.Outlook 28:752, Dec. 1980. 8. Walker, op.cit., p. 15. 9. Parkes, C. IM. Psychological aspects. IN The Management of Terminal disease, ed. by C. M. Saunders. London. Edward Arnold, 1978, p. 46. 10. Barstow, op.cit., p. 753. 1 I. Friel, Marie, and Tehan, C. B. Counteracting burn-out for the hospice care-giver. Cancer Nurs. 3:288, Aug. 1980. 12. Ibid., p. 287. Geriatr ic Nursing January /February 1983 27


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