Treating Families of Patients in Vegetative State: Adjustment and Interaction with Hospital Staff

Anat Shilansky and Rosemarie Weitz



Your soul, halfway between this world and the next,


Hovering above it, looking into the abyss, Undecided whether to remain here, or to leave it all behind.


You find no peace of mind, moving between darkness


And light, between life and death, despair and hope.


 


And the days pass, one after another, and yet there is no conclusion


Whether death is final or hope will get a fresh infusion.


And while you hover between these two worlds,


Awaiting permission to enter the next


But still being refused to reenter this one,


I sit here and await your decision with pain and love …


Published with permission of the author Rachi Brotman [1]


 


These lines are from a poem written by a father to his son lying in a vegetative state. With these words, the father is trying to describe the impossible reality experienced by him and other families coping with a member suffering from prolonged unconsciousness.


In order to cope with this complex reality, it is advisable to review the theoretical dynamics that are in motion in this unique world – a world with rules and logic of its own. This is the “twilight zone,” unknown to the outside world, where patients and families live in “limbo”, where death is disguised as life. In treating the vegetative patient and his family, there are no clear-cut answers or conventional rules with regard to accepted human behavior and reactions. Here there are different rules, when life and death become intertwined.


Staff members entering the realm of unconsciousness may experience a sense of confusion, or even alarm. Questions such as how to approach a family in such desperation, or to form a professional relationship and be supportive at the same time, are not easily answered. In this chapter, we attempt to present a broader perspective on the complex and intertwined undercurrents that make up the world of unconscious patients and their families, in their daily interactions and encounters with staff members. The chapter offers suggestions for more effective coping techniques that can ease the tension aroused by this extreme and almost impossible situation.


Focusing on the Families


Let us begin this section with a seemingly simple question. Who is your patient in the intensive-care unit (ICU)? Most medical professionals focus their treatment on the obvious subject – the patient. The family is important, but of secondary status. However, in the ICU, this natural assumption is not valid. While the patient’s needs are of the utmost importance, dealing with the family’s psychological difficulties is just as critical.


There are three main reasons for this assertion. In the first place, families in the ICU experience an extreme state of uncertainty. The need to control an uncontrollable situation will spur them to maintain an ongoing and intense connection with the staff – a need that cannot be ignored, despite the burden it creates for the staff members.


In addition, since scientific knowledge about vegetative patients and their recovery is still limited, it is not advisable to disregard the contribution the family can make to the patient’s recovery process. Families spend endless hours trying to stimulate their loved ones back to recovery and must therefore be recognized as part of the treatment plan.


The above conclusion may create fundamental conflicts over issues of boundaries, responsibilities, and authority. This presents a unique challenge: how do you include and achieve family assistance without disrupting the staff’s daily medical routine? How do the staff enable the family to fulfill its required role while keeping the professional boundaries clear?


The last factor, but by no means the least important, is the devastating situation itself and the ongoing nightmare experienced by the families, day in and day out. This acute situation must be addressed by the staff and may require immediate crisis intervention as urgent as the treatment of the patients themselves. In order to meet the challenges and complexities of this unique situation successfully, there is a need for proper professional assessment and treatment of the patient’s family.


Family Assessment


A family is a complex and sensitive system of significant interrelations [2]. When one of the members undergoes a major change, it immediately affects every other member as well. Accordingly, when one of its members suffers from prolonged unconsciousness, the entire family becomes enveloped in this breakdown of the life cycle. Life, as the family knew it before, will never be the same again. Vital areas in their lives have been disrupted. Intimate relationships, emotional interdependencies, economic status, housing accommodation, and occupational hazards all cause major changes in their daily routines. Each family will react differently, depending on its own patterns of behavior, based on many factors. Among these are: the premorbid and current characteristics of the patient and family, the nature and severity of the injury, and the availability of community resources to assist with coping [3]. It is essential to assess each family as a unique system. A combination of individual evaluation of each member of the family, along with a comprehensive approach to the family as a whole, will produce a better rehabilitation process.


The life cycle is one scale by which we can identify a family’s needs. The stage in a person’s life, age, and marital or parental status, are all variables that are influenced and disrupted by the crisis. The reassignment of former roles requires many adjustments on the part of family members and can cause a major change in the family’s balance of power and authority [4].


Another scale that can be helpful for assessing families is the subdivision of the following needs:


• Physical needs


• Emotional needs


• Spiritual needs


 


Physical needs include satisfying the family’s most basic needs, such as nutrition, lodging, mobility between the hospital and home, and a reasonable source of income. These needs must be taken care of as quickly as possible, because they are the foundation on which higher-level and more demanding challenges can be achieved.


Emotional needs relate to the necessity to relieve or lessen the feelings of emptiness and loss that are part of the emotional upheaval experienced by the patient’s family. These needs include a desire for affection, support, involvement, and belonging. These needs may be expressed in many different forms of behavior. Some family members tend to externalize their feelings through crying, anger, or intensive verbalizing. Others may turn inwards, building an inner wall of protection around themselves.


Spiritual needs are fulfilled when a family can give some meaning to the awesome situation that has befallen them. Religious faith, belief in the power of the injured member to heal himself, or even mystical hopes can all be of spiritual comfort.


Typical Psychological Reactions of the Family Members


Despite the fact that each family member will react uniquely in this crisis situation, there are certain common reactions that characterize most of them at some stage in the mourning process. All of these reactions are legitimate and natural, stemming from the difficulty to comprehend, digest, and cope with an unbearable situation. Some of these reactions include [58]:


• Anger and hostility


• Denial


• Guilt


• Overprotection


• Anxiety and depression


• Psychosomatic symptoms


• Social isolation


 


Let us elaborate on a few of these.


Anger and hostility are often expressed when a family member feels desperate and helpless. At the beginning, most of the anger is directed toward those who caused the injury, or even toward the patient himself, for not trying hard enough to recover. With the passing of time and the absence of proper channels into which legitimate anger can be unloaded, hostility may heighten. Unfortunately, staff members often become convenient and vulnerable targets for this hostility, since they have not been able to achieve the desired remedy.


Denial is a defense mechanism that assists family members in postponing the need to face up to a painful and undesirable reality. It lets them cope with the trauma gradually, enabling them to comprehend the changes in their lives, without depriving them of the right to hope. Often, it looks as if a family member is “ignoring” the facts, fantasizing about a quick recovery. Some of the expressions heard on the ICU may sound like this: “I know him, he’ll wake up when it suits him. He was always stubborn like that.” Or, “She’s so weak after the trauma that she can’t respond. Give her time and she’ll be back on her feet.” Phrases such as these are characteristic of a normal coping process and are considered to be adequate in the short term, but could become pathological if continued over a longer period.


With regard to anxiety and depression, studies have shown that over one-third of the care-givers of patients suffering from a severe head injury or from unconsciousness will develop significant levels of anxiety or depression [9,10]. Some of them, feeling burdened by the frustrating situation, may resort to outbursts of anger, considered to be a form of disguised depression [9,11,12].


In conclusion, the reactions of the family members may often be extreme, difficult to excuse, and maybe even frightening. They react this way because they are caught up in an unbearable situation. Under normal conditions, we would classify their behavior as pathological, but on the ICU this behavior is considered to be a normal and necessary stage in the beginning of the mourning process. A few examples are given below to illustrate some of the reactions and dynamics described.


Mrs. S., the mother of a 19-year-old boy, told her therapist, “I think that with the passing of time the staff members tend to forget just how painful it is to see one’s child so helpless. I realize that the daily routine is necessary, but it is so hard for me to leave my child alone, all night long, unable to speak for himself. What if he needs something? Who will be there to watch over his every sign? Is the daily routine really more important than my being there with him? Who can really answer this question, honestly?”


This mother is expressing feelings of anxiety and helplessness, and a need for emotional support. Since the staff members set boundaries between her son and herself, she turns her frustration and pain towards them.


Mrs. I., the wife of A. (43 years old): “It took time to fully comprehend the ramifications of my husband’s injury. At first I would come to the ICU for long days of futile anticipation that perhaps he would awaken, or at least show me some sign of awareness that I was there. At that time, anyone who tried to candidly prepare me for a bleak future was unable to penetrate the inner shield within me. Only time and the unchanging reality cracked that shield. I was overwhelmed with pain and fear. Although I knew it was essential for me to receive relevant information, to help me comprehend the confusing reality I was living in, only those who could understand and accept my pain and confusion helped me to survive a very traumatic period in my life.”


This woman is describing the importance of the denial mechanism as a protective shield, essential for her emotional survival in the early stages of the mourning process.


Mr. and Mrs. G., the parents of Y., (27 years old, and 5 years after their son’s accident): “When we first arrived at the ICU, we felt completely lost. We felt so helpless. And then when our son made signs to us with his eyes, we were discouraged and told that these were only reflexes. If we hadn’t been insistent about our son’s progress, who knows where he would be today. Our feeling was that instead of working together with us, the staff were ‘fighting’ us almost all the way. There must be a better way to cooperate and trust each other. We wanted more information to help us understand the source of the injury. Sometimes we even felt that some information was being hidden from us. We wanted to be more involved in his treatment, but seldom received direct instructions. Although we understand that the staff need to maintain a routine on the ward, they must never forget that ‘no family, no rehabilitation!’ ”


Anger is the most frequent reaction among families on the ICU. It is undoubtedly the most difficult behavior for the staff workers to cope with and often leads to painful conflicts.


In conclusion, the family undergoes an excruciatingly difficult period of loss. This situation induces extreme reactions, stemming from their basic needs. It must be kept in mind that while family members will react differently from each other, identifying their needs and giving them support will improve the quality of the rehabilitation process.


Focusing on the Staff: Emotional Stress and Sources of Tension


Staff members treating the vegetative patient are exposed to never-ending traumatic situations and suffer from what is known as “secondary trauma effects” [13]. As a result, the everyday working conditions are saturated with ongoing stress and high levels of tension. Let us examine some of the components of this stressful situation.


To start with, none of us are immune to life crises, such as road accidents and illnesses. Repeated exposure to the patients’ traumatic stories leaves its impact on the staff members’ sense of well-being. Although the staff absorb these stories daily, they do not have permission to express their fears openly. On the contrary, they are expected to be “strong” and to contain the sorrow of the families. Accumulation of locked-in feelings can be a source of great frustration.


In addition, the very fact that the patient is unconscious adds complexity to an already tense and complicated situation. The staff attendants find themselves in a position in which they have to decipher every sign that the patient makes. This demands an ongoing state of alertness and an extreme sense of responsibility and sensitivity on their parts.


Team members are expected to cure patients – but in the case of the vegetative patient, a cure is not always possible, leaving staff members feeling impotent and useless.


The staff’s own feelings of helplessness are exacerbated by the families’ endless complaints about the treatment of their loved ones. Their unrealistic anticipation of the patient’s quick recovery is often expressed by putting blame on the staff [5]. In summary, the immense responsibility and exposure to disaster situations faced by staff members, and the disappointment and accusations they meet with from the families, cause tremendous pressure on the team, creating continuous frustration, vulnerability, and burn-out.


Among the typical psychological reactions of the staff, the most common and natural reactions to the stress situation mentioned above are usually various forms of avoidance, or a variety of expressions of anger. A few examples are given below.


• The helplessness felt by a patient’s family is often a common feeling for staff employees as well. When it hurts too much to bear the pain of a family member, the hospital members may develop a pattern of ignoring or avoiding real relationships with that person – for example, a patient’s mother who repeatedly approaches the doctor for some sign of encouragement. Unable to bear these ongoing encounters, the doctor may often find excuses for postponing their meetings.


• Common reactions among the team members and families are to express anger toward each other. For example, families often object to certain demands from the staff, such as to leave the patient’s room at certain hours. The nurse, instead of understanding the source of the emotions leading to the family’s objections, feels frustrated herself and expresses hostility towards them, inducing a vicious circle of reciprocal anger.


• When caught up in the vicious circle of anger, it is not hard to become judgmental as well. Making moral judgments about people in stressful states is unproductive and should be avoided.


• The issue of boundaries between staff and families is a very complex one. If the staff are too firm with regard to ward regulations, the family may view it as being rigid and insensitive to their needs. If a staff member is too lenient and becomes overinvolved, this too can be confusing and may be interpreted wrongly. These two prominent patterns of behavior – underdoing things or overdoing them – are two extremes of the same defense mechanism, and both are counterproductive. It is recommended that one should try to identify one’s own dominant pattern in order to bring about the professional change needed on this complex ward.


 


Shaw and McMahon [14] state that the main contribution made by the staff to the conflict with families is failure to recognize that in most cases, the family is in a state of stress and need, rather than being “pathological” or troublesome.


In conclusion, on the ICU there are two parties with a common interest, but often with different or even opposed needs. This gives rise to conflicts about “control” and “moral” issues. The control issue is the more obvious one. The family wants to set the rules on the ward, or at least be included in them, while the staff feel a need to restrain them.


The moral question is: who determines the patient’s quality of life? Who decides what is best for him or her? Most families believe that this is not only their right, but their obligation as well. Most professionals would claim that it is their prerogative, due to their medical knowledge and experience. A few examples of common reactions expressed by staff members are given below.


Mrs. S., a nurse: “The families do not fully comprehend the complexities and heavy demands that are involved in the ongoing management of the ICU. They expect us to fulfill their requests immediately, no matter what else we are doing. There is neither understanding of our duties nor consideration of the needs of other patients. I know that the family is in the middle of a crisis, but there are other professionals to assist them with their sorrow. They shouldn’t disrupt our daily routine. Also, they should be encouraged to go back to their daily lives and leave their patient to us.”


The ICU staff members’ feelings of helplessness are in parallel with those of the families. In many instances, setting firm boundaries helps the staff avoid these feelings, which can be exacerbated by the daily, ongoing relations with the families.


Mr. N., paramedical staff member: “We are working in the most difficult ward. The responsibility is huge and our patients are considered ‘high-risk.’ I feel that the families expect miracles and place unrealistic demands upon us. They don’t understand that a major part of the awakening process is just waiting to see if something develops spontaneously. They want active intervention, but that isn’t always feasible.” This staff member’s frustration, caused by the patient’s lack of progress, is being expressed through the use of a defense mechanism, such as accusing the family of having unrealistic expectations.


Dr. A.: “There is always the heavy burden of responsibility and constant anxiety about deterioration of the patient. The ICU is unlike any other ward. The ‘heroic’ parts of medicine are achieved before and after entering the ICU. In the acute hospital, the patient is fighting for his life. In the head-trauma rehabilitation ward, the patient is fighting to regain independent functions. But here, we are only striving to restore consciousness – a long and often pessimistic process. The families don’t usually comprehend the consequences of the brain damage. Sometimes they ask for information that has no meaning for the patient’s progress, and yet they are emotionally unprepared to listen to the facts as we see them.”


Most medical staff members feel appreciated; not so on the ICU, according to this doctor. In spite of the enormous amount of effort put in, the devastating situation prevents families from expressing feelings of satisfaction and gratitude. This may be a contributing factor to the burn-out situation experienced by many.


Recommendations and Suggested Strategies


Broadening family involvement in the rehabilitation process. It appears that the most significant source of frustration for the family members is their need to cope with the unknown. The uncertainty and uncontrollability of the vegetative state makes them strive to receive as much information as possible. Although there is no real cure for uncertainty, we suggest that direct clarifications about the patient’s progress should be conveyed and that the families should be consistently acquainted with the staff’s plans.


Active inclusion of family members in the rehabilitation program should lessen their anger and minimize some of the potential conflicts. Regular, prearranged family/staff meetings should be maintained in order to exchange information and to clarify future goals in the treatment program, with an emphasis on the family’s special roles.


 


Development of casual channels of communication. Having team members initiate invitations to the families for special events is another technique for enhancing their knowledge and improving the atmosphere. Lectures on relevant and crucial matters, such as the risks involved in feeding the vegetative patient, or extended physical training of the patient by the families, are a form of coaching and instructing that will be of mutual benefit to both families and staff. Also, this is an opportunity to change misconceptions that families may have about traumatic brain injury [15]. In addition, it is not only an educational plan [16], but also develops a closer and more interactive relationship between the mentor and the “protégé.”


 


Psychosocial intervention for families. Needless to say, the families on the ICU need professional support, guidance, and help in reorganizing their lives. As already mentioned, each individual and family have specific needs. A psychosocial evaluation should help determine what some of these needs are. Once the predominant problems have been determined, they should be addressed by permanent, therapeutic interventions. The social worker will try to identify each family’s difficulties and dilemmas and search for solutions that are relevant to the breakdown in their life cycle. The main goal is to help the family members rebalance their emotional and instrumental resources in such a way that they can function both in the hospital and in the outside world, enabling each individual to begin the healing process and adjustment to the crisis that has befallen him or her. Working through dilemmas, such as loyalty to the patient or to other family members, or enabling family members to be helpers and clients at the same time, are all significant components in the mourning process.


 


Supportive intervention with staff members. It is commonly perceived that the hospital personnel are healthy and strong, always devoted and yet detached from the daily traumatic environment. Although this may be expected of them, the reality is otherwise. It is therefore recommended that a support group should be set up that every team member may attend. The aim of this group would be to create a supportive atmosphere in which it is legitimate to raise and express hostile feelings, frustrations, distress, pain, etc. The discovery that others share in these feelings often helps reduce pressures that may have been bottled up inside. By expressing them in a legitimate setting, the staff can avoid releasing them during work in undesirable directions.


In conclusion, a combination of maintaining healthier interactions between the families and the staff members, while at the same time giving support to both, should produce a better sense of satisfaction among the family members and improved professionalism among the staff.


References


1. Brotman R. To my beloved son [previously unpublished].


2. Broom L, Selznick P. Sociology, 4th ed. NewYork: Harper and Row, 1968.


3. Florian V, Katz S. The other victims of traumatic brain injury: consequences for family members. Neuropsychology 1991; 5: 267–79.


4. Maitz E, Sacks P. Treating families of individuals with traumatic brain injury from a family systems perspective. J Head Trauma Rehabil 1995; 10: 1–11.


5. Stern M, Sazbon L, Becker E, Costeff H. Severe behavioral disturbance in families of patients with prolonged coma. Brain Inj 1988; 2: 259–62.


6. Florian V, Katz S, Lahav V. Impact of traumatic brain damage on family dynamics and functioning: a review. Brain Inj 1989; 3: 219–33.


7. Lezak M. Brain damage is a family affair. J Clin Exp Neuropsychol 1988; 10: 111–23.


8. Brooks N. The head injured family. J Clin Exp Neuropsychol 1991; 13: 155–88.


9. Nigel M, Kersel D, Havill J, Sleigh J. Caregiver burden at 1 year following severe traumatic brain injury. Brain Inj 1998; 12: 1045–59.


10. Gillen R, Tennen H, Affleck G, Steinpreis R. Distress, depressive symptoms, and depressive disorder among caregivers of patients with brain injury. J Head Trauma Rehabil 1998; 13: 31–43.


11. Douglas J, Spellacy F. Indicators of long-term family functioning following severe traumatic brain injury in adults. Brain Inj 1996; 10: 819–39.


12. Burgess E, Drotar D, Taylor G, Wade S, Stancin T, Yeates K. The family burden of injury interview: reliability and validity studies. J Head Trauma Rehabil 1999; 14: 394–405.


13. McCann I, Pearlman L. Vicarious traumatization: a framework for understanding psychological effects on working with victims. J Trauma Stress 1990; 3: 131–51.


14. Shaw L, Mcmahon B. Family-staff conflict in the rehabilitation setting: causes, consequences and implications. Brain Inj 1990; 4: 87–93.


15. Springer J, Farmer J, Bouman D. Common misconceptions about traumatic brain injury among family members of rehabilitation patients. J Head Trauma Rehabil 1997; 12: 41–50.


16. Blosser J, De Pompei R. Fostering effective family involvement through mentoring. J Head Trauma Rehabil 1995; 10: 46–56.


< div class='tao-gold-member'>

Stay updated, free articles. Join our Telegram channel

Jul 31, 2016 | Posted by in NEUROLOGY | Comments Off on Treating Families of Patients in Vegetative State: Adjustment and Interaction with Hospital Staff

Full access? Get Clinical Tree

Get Clinical Tree app for offline access