What Social Services Offer to Patients Who Undergo Cardiac Surgery

ROBERTA E. PEAY, M.A.f M.S.W.

techniques for diagnosis and treat¬ part of this staff, can do has been of specific SPECIALment of patients with rheumatic or con¬ interest to me, as I have provided social services genital heart disease have developed dramati- to this particular group of patients for the past cally over a relatively short time. No longer &y2 years. are many of these patients diagnosed solely by The Clinical Center of the National Institutes X-ray, the stethoscope, and the electrocardio¬ of Health, Public Health Service, is a 500-bed gram in their own communities. They are re¬ research hospital which serves seven separate ferred to large medical centers which frequently Institutes, one of which is the National Heart are far from their homes. There they meet Institute. The clinical investigations bf the many different people and have new and un- Cardiology and Surgical Branches of the Na¬ predictable experiences, including undergoing tional Heart Institute are primarily in the area a multiplicity of unfamiliar diagnostic tests and of diagnostic techniques for evaluating congen¬ procedures relative to their heart condition. ital and acquired heart defects and in surgical There is also, now, a much greater chance that techniques for treating these lesions. All a heart operation will be the treatment of patients are referred by their physicians and are choice. admitted on the basis of the research interest The sobering fact that the heart is the organ of the clinical investigators. There is no cost involved, and that an operation may be nec¬ to the patient for hospitalization or for services essary, increases the patient's and family's provided. Patients come from all parts of the anxiety.already engendered by leaving home, United States and from many foreign countries, by transportation problems, by possible family and they have varied economic, educational, disruption, by the degree of cardiac disability, racial, religious, and social backgrounds. and by economic hardship. The knowledge There are six social work positions in the Na¬ that diagnostic and surgical techniques are tional Heart Institute; one is that of social serv¬ available and are improving is helpful, but their ice program supervisor. To enable the same comparative newness can make the hospital ex¬ social worker to follow a patient throughout his perience for cardiac patients frightening as well hospital experience, two caseworkers are as¬ as hopeful. signed to the Cardiology and Surgical Branches. To help these patients get the most construc¬ This continuity of social service through a tive benefit from their experience is the re¬ particularly stressful experience is felt to be sponsibility of the whole staff of the hospital important. or medical center. What the social worker, as These two caseworkers carry full social serv¬ ice responsibility for their group of patients Miss Peay is with the Social Service Department of and therefore are an integral part of the clinical the Clinical Center, National Institutes of Health, programs of both the Cardiology and Surgical Public Health Service, at Bethesda, Md. Branches. They are as responsible for con-

Vol. 78, No. 12, December 1963 1045 tributing their knowledge to the treatment of happening, the problems presented by patients the patient group as they are for assisting the and families, and the ways in which the social individual patient. The chiefs of the Cardi¬ worker can be helpful. ology and Surgical Branches are easily acces¬ sible to the social workers for discussion of First Days After Admission general and specific problems. The chief sur¬ geon, the chief cardiologist, and I collaborated When a patient, child or adult, arrives at the in writing pamphlets which are sent to parents Clinical Center, he frequently has come from a of children and adult patients prior to admis¬ distant place. He may be from another country sion to the diagnostic service of the Cardiology and may not even speak English. He may have Branch. These pamphlets are based on recogni¬ left his home and community for the first time tion by the Heart Institute staff that this is an in his life, and his social and educational experi¬ anxious period for patients, and they can be ences may have been very limited. He may be prepared in advance for certain general alone or accompanied by family members who procedures. may be dominating, controlling, anxious, or at The social workers participate in interdisci- times even hysterical. He may have little un¬ plinary preadmission and discharge planning derstanding of what to expect from the Clinical for certain groups of patients referred by State, Center staff. He brings his own particular wor¬ national, or Federal programs such as United ries about his heart condition and about what Mine Workers of America Welfare and Retire¬ the future has in store for him. He may be ment Fund, Bureau of Prisons, and Crippled deeply concerned about his family and their wel¬ Children's Programs. They also take part in fare during his absence, about the stability of the medical and nursing conferences and in his job, and about his status in his family and daily and weekly rounds. However, direct his community. He may have had no experi¬ social casework services to the individual patient ence or previous unhappy experiences with hos¬ and family are the major responsibility of these pitals and medical care. two social workers. Some patients may be unable to ask questions Approximately 500 patients, from infants to or unable to express or show fear in order to pro¬ the elderly, were admitted to the cardiac diag¬ tect their families or themselves, and some may nostic and surgical services in 1961. Usually maintain such control of their feelings that they from 7 to 13 patients are admitted weekly, and are immobilized. There are hostile, demanding, children and adults are placed in the same nurs¬ vociferous, unit-disrupting patients, and there ing unit where they remain from 4 or 5 days to are the compliant, dependent, quiet, "good" a month or longer. These patients can be criti¬ patients. cally ill or relatively asymptomatic. The Neither the child nor his parents may have Cardiology Branch has 18 beds in one nursing anticipated separation at night, and this can be unit and the Surgical Branch has 14 beds in an¬ their first unhappy experience. The parents other unit on another floor. may be unable to explain this necessity or to From 35 to 50 percent of the patients are tell the child that he is going to have tests and under 16 years of age, and are usually accom- injections. Some children are terrified of sepa¬ panied by one or both parents. Frequently ration from their parents even briefly, and there family members also accompany the adult are those children who cannot show any kind of patients. At times parents or spouses require weakness like tears because they will incur the the most constructive social casework services if anger of their parents. The social worker de¬ the patient is to get the fullest benefit from his termines the reason for these kinds of behavior medical and surgical care. and effects modification or change, if possible. Certain periods during hospitalization for Most patients and families have some fears or diagnostic evaluation and for surgery are likely anxieties when they arrive, varying from what to be more stressful for patients and their fami¬ we consider minimal to near panic; these emo- lies than others. These will be described as tions can also vary in terms of the situation at clearly as possible in relation to what might be a given time. In this initial period the social

1046 Public Health Reports worker assesses the extent and nature of the pa- child, may mean punishment. There may be tient's anxiety and needs. Her task is to elimi- acquiescence to authority without understand- nate, if possible, misunderstandings or unreal- ing or ability to question. istic expectations or fears, to clarify some Although other factors may contribute to the medical recommendations or explanations, to anxiety of patients and families at this time, relieve immediate economic and other external concern about what the catheterization will re- pressures, if possible, and give supportive case- veal is a primary source of anxiety. This is work help. It is important to recognize with the test which will show more specifically the the patient that everybody is scared and that kind and degree of heart disease and determiine these feelings are natural, to assure him that he whether or not surgery is indicated. The time will have help as needed-that he is not alone during the catheterization can be particularly with his troubles. When the initial supportive upsetting for the parents and family members relationship and the assessment of the patient's who are waiting for the patient to return and needs, strengths, and weaknesses are shared also for the results of the test, particularly if with the medical and nursing staff, the staff's it lasts longer than they expected or if there care of the patient enables him to react more appear to be complications after the patient re- constructively to the procedures and recommen- turns to his room. Some patients need to be dations of the diagnostic period. put in oxygen tents or have intravenous feed- ings; some are hooked up to EKG machines or Diagnostic Period blood pressure cuffs. The level of anxiety in the family or patient sometimes prevents their All patients have routine X-rays, electro- understanding factual explanations and reas- cardiograms, phonocardiograms, and blood surances from the physician and nurse. The tests. Most patients have a left or right cardiac social worker is there to ascertain the reasons catheterization, sometimes both, and sometimes for concern and provide casework service as an angiocardiogram. For these tests they go needed. to a catheterization laboratory equipped some- If there are no further tests, the patient and what like an operating room with the staff in his family might not learn for a day or two green caps, masks, and suits. The patient is what the results show or what the cardiologist's usually awake but drowsy, although he can be recommendations are. These recommendations put to sleep for part of the study or for all of can be (a) minimal or no cardiac problem; (b) it. The tests are uncomfortable, but rarely very cardiac disease not amenable to surgery and re- painful, and they are essentially benign. They quiring continued and increased limitation of involve putting a small catheter in the arm or activity; (c) a serious cardiac defect for which leg of the patient. no surgical technique is currently available; (d) The procedure is explained to the patient and a severe cardiac defect or multiple defects for his family by the surgeon from the catheteriza- which surgery is recommended but very risky; tion laboratory and by the cardiologist, but this (e) a cardiac lesion correctable by present well- does not mean that all patients understand the tried techniques and correction advised; (f) a procedure or are relaxed about it. They may defect in small, sometimes asymptomatic chil- have had previous frightening experiences with dren for which surgery should be scheduled in a catheterization or they may be unable to con- the next 2 or 3 years; (g) a palliative procedure ceive of tests being done in their hearts. They to help a small child grow and develop until may not have understood the physician's ex- further treatment can be undertaken. planation because of educational limitations or The patients' and families' responses to any emotional blocking. They may be afraid of of these recommendations can be very appro- being put to sleep or insistent that they be put priate, but because of their own emotional, so- to sleep. They may have varying degrees of cial, and economic needs, some require help in fear of needles, bleeding, or pain. The child understanding, in accepting, and in following may anticipate separation from parents and be the recommendations. There may be parents, afraid they will not return, or this test, to the who cannot "give up" a sick child; children or

Vol. 78, No. 12, December 1963 1047 adults who relate their illnesses to getting love dren can have, and much of the social worker's and attention or to being punished; a husband effort to sustain the child through this period who cannot continue to tolerate a dependent sick is channeled through helping parents to main¬ wife or a wife who cannot tolerate an independ¬ tain a calm, confident, honest, and understand¬ ent strong husband. The patient who has not ing manner toward their child. This is not functioned for years may face with difficulty easy for patients or parents once the day of sur¬ the fact of being cured and all that it implies; gery has been scheduled. Although the deci¬ other patients cannot tolerate any dependency, sion has been made, it may have been accepted even minimal limitations. A patient may have only on an intellectual basis. Many parents been told previously that an operation is his are ambivalent; also, parents may disagree. only hope for survival; a patient may have been They wonder what and how much the child told by family and friends not to let anybody should be told, and when to tell him. Some cut him. There are patients who have diffi¬ parents cannot bear to tell even an older child culty making any decision, parents having to anything about the operation or about any pos¬ make a difficult decision for their child, pa¬ sible pain; some parents have to promise the tients who relate surgery to death, and patients unrealistic and the impossible; some feel the with realistic economic, educational, vocational, need to talk about unnecessary details with or and cultural medical-social problems. in the presence of the child; some parents expect This diagnostic and decision-making period or demand too much from the child; some, be¬ is filled with unavoidable medical unknowns to cause of their own needs and their emotional which the patients, with their varying back¬ inability to handle them, cannot bear to let the grounds, their expectations, and their hopes, child cry or ask questions; some parents cannot must relate. Social casework services can re¬ tolerate hostility from their child; some cannot duce some of the unrealistic aspects of their allow an older child, particularly an adolescent, fears, help them handle some of their anxieties, to participate in planning for the operation; and hopefully, can alleviate some of the exter¬ and some very stable and adequate parents just nal pressures. The aim of these services is to don't know what to do. help patients and families to plan construc- It is not easy for parents to manage their own tively within the limits of the medical fears, their possible rejection by the child and recommendations. reactivation of their own guilt, their past expe¬ riences with illness and surgery, their hostility, Presurgical Period their ambivalence, and their fear of losing their child in such a way that the child is unaffected Patients for whom surgery is planned may by parental reactions. Some parents need either remain for surgery during their current minimal psychologically supportive help or admission or return later. The decision is help with external pressures from the social based on the surgeon's opinion of the patient's worker, and some need it continuously through¬ cardiac status, on the surgical schedule, on the out this period. patient's blood type, on the patient's emotional There is, of course, a real possibility that they and social situation, and on his wishes. might lose their child, but in many surgical pro¬ These patients are transferred or returned cedures the risk is minimal, and it is vital that to a surgical nursing unit, where they may wait the parents' conception of the child's operation from 3 days to 2 or 3 weeks for the operation. be based on a knowledge of the risks in the spe¬ The unit's staff is new to the patients; only the cific type of surgery required for their own social worker is familiar. Most patients have child, rather than on experiences of other pa¬ some member of the family with them, at least tients and families or on past interpretations by for the day or two prior to surgery, and almost physicians, families, or friends. without exception the children have one or both Many of these emotional reactions are also parents. true of adult and teenage patients, where the The presence of the parents is the most sup¬ primary casework focus is the patient rather portive and reassuring safeguard that the chil¬ than his family. Such patients have many of

1048 Public Health Reports the same problems described in the diagnostic If the social worker has had opportunities to phase. Tension and anxiety increase as the day become familiar with the child's case, she can of surgery approaches, and one goal of the help the parents through the moments after the social worker is to help the patient express his surgery door closes by constructive recapitula- anxious feelings and his hopes so that the un¬ tion of the factors influencing their decision, realistic fears or expectations can be resolved, supportive recognition of their fears, and fur¬ misunderstandings clarified, and the universal- ther clarification of their understanding of what ity of fear recognized and understood as accept¬ to expect. However, if she has only superficial able and normal. knowledge of the case or none at all, she can only These patients and their families need to observe the family's activities and responses, mobilize as much emotional strength as possible. offer her services, and act according to her best Their confidence in the surgeon contributes a judgment. great deal to this strength, but, in this new ex¬ It can happen that a family arrives at this perience, they are nevertheless likely to feel in- experience with unrealistic ideas of the opera¬ secure. The patients are separated from their tion or with little or no understanding of what families and are thinking of the possibility that to expect following heart surgery. One hus¬ they may not return; this increases their concern band was under the impression that his wife's about their families' futures as well as their heart would be taken out of her body, put on a own. Because they must protect their families table, operated on, and put back. Another from worry about them, they cannot share their family member thought the patient would have feelings with any relative, and thus they feel to be cut in two for the surgeon to get at the isolated with their fears and unxieties. Such heart. These are extremes, but they indicate isolation can intensify feelings of inade- what unrealistic and frightening thoughts these quacy.their being unable to do their part in families can have. order to survive surgery. As the operation progresses, time goes by Under such stresses, many patients deny their very slowly, and tension is likely to increase. fears; others become immobilized, hysterical, There should be periodic, supportive, brief so¬ belligerent, or hyperactive. We know that pa¬ cial work interviews with the family. If there tients take with them to the operating room is trouble in the operating room or a change many frightening and unrealistic thoughts; of operative plans, the family is alerted and the both children and adults have fantasies or dis- social worker is also informed. However, if the turbing nightmares relating to their concept of operation is going smoothly, the staff on the the surgeon and his knife. This emphasizes the nursing unit and the family do not hear any- need for more intensive efforts of the social thing, and the day is long for both. When the worker to help these patients express their fears family is told that the operation is over and prior to the day of surgery. the patient is all right, the social worker shares Heart operations may last as long as 7 hours. with them the release of much pent-up tension. The waiting families are aware of this, but it is If the family has waited with the strong cer- a very long and tense day for them. If the tainty of imminent loss, this moment could be social worker knows them well enough, she is overwhelming. able to the of their anticipate degree tension, Period their ways of handling this, how much support¬ Postsurgical ive help they will need, and when their need The postsurgical period has some of the same will be greatest. elements of stress as the day of surgery. There Particularly stressful for the family is the is still some uncertainty about the outcome; the time when the patient.especially a child. family sees the patient in pain, in an oxgyen leaves the nursing unit for the operating room. tent, with chest tubes, only partially awake or The family follows as far as possible, some¬ unresponsive. The course of this critical period times to the operating room door. If the child of recovery can be benign or stormy, but again, is not asleep, he may cry, and this can be a dev¬ families and patients differ in their responses to astating emotional experience. a specific situation.

Vol. 78, No. 12, December 1963 1049 The postsurgical room contains four beds and is inconceivable that this could occur in so short much necessary emergency equipment; here, the a time; because they are afraid to leave a safe patient is completely dependent on the staff. medical setting; because they don't understand There may be as many as four postoperative recommendations for limitation of activity, patients in the room at the same time, and diet, or followup medical supervision; because there are always chances of medical or surgical they have no suitable place to go or because crises. A patient may suddenly have cardiac they don't know how they are going to get arrest, which necessitates opening the chest and home; or because they face seemingly insur- massaging the heart, or it may be necessary mountable medical, social, and economic prob¬ to return a patient to the operating room be¬ lems at home. Some patients cannot accept the cause of internal chest bleeding. Patients may favorable postsurgical result because of well- be agitated, restless, and highly vocal, and al¬ grounded emotional needs. The social worker though each bed can be closed off by curtains, can identify the problem with patients or fam¬ the sounds are audible. ilies, help them resolve their understanding of At this frightening time for patients, they and feelings about the recommendations, and can use the help of the social worker, particu¬ refer them to the appropriate community larly if they have no family members with agency, if necessary. them. Social workers as a rule have hesitated To summarize, no given patient or group of to enter recovery rooms because of the critical patients will respond to these stress-producing physical state of the patient, but experience has situations in the same way and at the same shown that patients are acutely distressed and period of time. Thus, there can be no clearly can use supportive casework help during this defined points during hospitalization at which period. Again, the efforts of the social worker social services are the most important; they are directed toward helping the parents and should be available whenever needed. families maintain a confident and calm manner At the Clinical Center the social workers giv¬ when they see the patient, since they can be ing such services to patients being evaluated anxious to all degrees.angry, resentful,hyster- and treated surgically for a cardiac defect are ical, confused, tired, demanding, or im- an integral part of the cardiology and surgical mobilized. staffs as well as the Social Service Department. However, even though the operation is a suc¬ They are included in overall planning for the cess and the postsurgical course benign, most patients as well as in giving direct social case¬ patients, both children and adults, have a period work service to the individual patient or family of abnormal reaction about 4 or 5 days after member, and they participate in both individual surgery.either withdrawing or being noncom- and collaborative studies. The caseworker municative, belligerent, demanding, complain- needs to be flexible and skilled in brief con¬ ing, nervous, or emotionally labile. This is tacts or on-the-spot interviewing as well as in difficult both for the patient and for the family, the more structured and scheduled interviewing, particularly for parents. The social worker and and she must be constructively aggressive and the staff, who have seen this reaction many responsibly available to respond to any need. times, can reassure patients and families with Cardiac patients for whom surgery is contem- confidence that this is not scientifically explain- plated or performed have, in general, amazing able but that it is temporary. courage and emotional strength, but it is a new The usual postoperative stay is from 10 days and stressful experience which can be best mas- to 2 weeks. Children recuperate much more tered if the professional skills of the whole staff quickly than adults, and some leave after 1 responsible for their care are used both cohe- week. Discharge is discussed with the patient sively and separately, as needed. as soon as possible, because this helps reinforce With such an approach it is believed that the the idea of complete recovery. Conversely, experience of cardiac surgery will be less trau- however, this idea can be frightening or upset- matic, and it may even become a constructive ting for some patients or families.because it growth experience for the majority of patients.

1050 Public Health Reports