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Undergoing a critical sickness means not to be capable and not to be able to decide

Oscar Beltrán Salazar^1
1Profesor de la Facultad de Enfermería de la Universidad de Antioquia, Medellín, Colombia

Mail delivery: Calle 64 # 52-09 Oficina 204. Medellín, Colombia

Manuscript received by 13.4.07
Manuscript accepted by 19.7.07

Index de Enfermería [Index Enferm] 2008; 17(2): 92-96

How to cite this document

Abstract

Objective: To describe the meaning for the critically sick patients hospitalized in ICU of the experience of being dependent of nurses for meeting needs. Methodology Phenomenological focused research carried out in Medellín in 2006; it included nine adults among 24 and 80 years who were critically sick and hospitalized in ICU. The interview in depth was used for gathering information. The data were analyzed according to the outline proposed by Cohen, Kahan and Steeves. Results: The dependence on other people to act and decide, the suffering and the pain influence on the hardness of the experience of suffering a serious illness. Discussion: Not to be capable of meeting the own needs and making decisions make the experience of suffering a serious illness "hard and difficult". Conclusion: nurses should not assume the dependence of patients with a serious illness but rather it should be evaluated in each case, as the same as the responses to this dependence to assure the respect for sick people' rights.
Key-words: Dependence, nursing basic care, intensive care, patient's defence, patient's participation.

Introduction

    In order to obtain their well-being, human beings should acquire the satisfaction of their physical, psychological and social requirements with autonomy and responsibility; illness states, hospitalization and some therapeutic interventions, such as, the sedation and presence of probes, catheters and elements of advanced technology can overturn this satisfaction because they produce autonomy and lifestyle changes by producing alterations of corporal systems. Torralba¹ expresses that "illness means a health reduction and reducing of the possibilities of human realization; the sick person suffers, lacks capacities, must undergo treatments, and is less free".
    Besides of the physical problems caused by the illness, "solitude, impotence, fear and anxiety sensations are present also",² as the same as difficulties for taking decisions regarding to the insertion and use of diagnostic and therapeutic means, even in those cases in which those elements could originate adverse effects, as uneasiness and discomfort; therefore, the responsibility of participating in making such decisions relapses in family members or in the health team members,³ but, the patient should confront the effects that produce the therapeutic elements. According to Torralba,¹ "the illness experience is directly related with the human being's external freedom reduction" and Travelbee⁴ outlines that "people realize that they are sick when they notice the loss ability to see, to speak, to play, to smell, to write, to listen, to reach and to lift objects, to get dressed and for the personal care". People can become more dependent than habitually they are or deny the illness and behave as if they were healthy during an illness event, Peplau³ outlines.
    When an illness reduces the people's capacity to identify their daily life needs, nurses should participate according to the limitation grade that each individual presents, "substituting, supporting and accompanying them in their meeting needs".^6,7 Moreover, "nurses should activate the hope, to find an acceptable interpretation of illness, pain, fear and anguish"⁸. According to Orem^6,9,10 "nurses act as substitute, in a compensatory system when the patients cannot participate in their own care; as help, in a partially compensatory nursing system with the patients participate in their own care and as company, in an educational support system, for patients with capacities for self care". ICU is located in the compensatory nursing systems category defined by Orem.¹⁰
    "Dependence from nurses becomes more useful and necessary than the dependence from significant family members" when the patients are admitted into the hospital.² Madjar¹¹ expresses that a sick person should "give the body to be hurt and injured... allow the free access to their own body knowing that such access probably causes pain". He denominates this type of pain "inflicted pain" for nurses during care duties.
    The dependence situation toward nurses is denominated by Egger¹² "the second childhood" because patients "require of other people to satisfy their needs and have difficulties to assume responsibilities".
    With the purpose of understanding the meaning of depending on other people during the event of suffering a serious illness and being hospitalized in an ICU was carried out a phenomenological study whose results showed that the dependence to act and to decide presented by the patients is an important aspect of being sick and that the responses of the patients in front of the participation of other people in the satisfaction of their own necessities are varied.

Methodology

    It is a phenomenological study that included nine adult people^13,14 among 24 and 80 years old, who were critically sick and hospitalized in an ICU. They accepted to relate their experience and to participate in the study. The selection of the participants was made by "purpose sampling",¹⁵ selecting the better participants with the best information. The saturation of the information was considered when "there were not new data to contribute to the phenomenon understanding".¹³
    The participants were six women and three men; the time lapsed among the moment they leaved the ICU and the moment they were interviewed oscillated among zero days and 12 years.
    Depth interviews were used for gathering the information; the interviews duration lasted among forty minutes and one hour; with each patient was carried out an encounter that finished when they expressed not to have anything else to add about the experience. The study was carried out in Medellín between the months of April and October 2006.
    The interviews were recorded and transcribed by the researcher. The analysis of the information was carried out according to the outline proposed by Cohen, Kahn and Steeves.¹⁶ They outline that the analysis begins with the achievement of the first interview, followed by an immersion in the data with the repeatedly reading of the interviews and analysing them line to line to select the meaning units and samples; then the participants` significant topics were selected, memos and diagrams about them were edited. The following step consisted on carrying out a bibliographical search.
    Lastly, a paper was made¹⁶ reflecting the topics about the experience of participants. The topics were verified, allowing at two of the participants to read the description to determine its correspondence with what they wanted to say.¹⁶ Besides, the results of the analysis were discussed with other nurses who had the opportunity to express their agreements and disagreements regarding the data interpretations.

Results

    The results of this study allowed describing the meaning that the dependence on other people for care has for the participants and the responses they give to this condition.
    Suffering a critical illness means not to be able to make decisions about matters that concern the patients themselves, related with medications administration, therapeutic and diagnostic elements utilization, procedures and surgeries realization, and even the termination of life. It means to depend and accept the decisions made by others as in a kind of game:
    "It locates the person in the position to put at stake his life and allow to others to play with it... in a game where there is a person almost as "to that you catch mouse" (popular children´s game) that is the life." (E. 6)
    The limitation to make decisions is presented when people have lost conscience or cognitive functions, judgement and memory alterations. Not to be able to decide about matters that affect patients themselves could mean that somehow, the right to exercise their autonomy to decide about what they accept or want:
    "The own capacity of making decision is in dubious ¡this it is what you need! And they make you everything without asking, without telling, without keeping it in mind"... That is what happens in an ICU and you cannot make the decision. The main character of the life becomes secondary, in front of the scientific thing. Many times The decision is not yours; they, the technology, the medical decision and you yourselves play with life" (E. 6).

I had the capacity to decide. The experience of a critical illness commits the patient's autonomy and independence, what means that interferes with the necessary conditions to make decisions and satisfy by themselves the own needs. Under this situation, it is necessary to appeal to other people so that they decide and the person is located in a dependence position to carry out activities. Due to the high complexity and the demands of a sick person in critical state, the meeting needs are automatically assumed by nurses.
    However, the patients could make decisions when the health conditions allowed it to them, when they themselves can realize that they were able to make so. "Not to be unaware" it is an expression used by one participant to express having the knowledge and responsibility to decide in front of their own well-being:
    "But I had the ability to decide, I am not so unaware to attempt against my own life." (E. 6)
    "I decided, I had to make it and logically my relatives supported me." (E. 8)
    Another participation form in making decisions consists on imparting instructions previously, like a form of foreseeing the future, so the relatives know with clarity the patient's point of view and the form like each one would decide, given a certain situation:
    "We had discussed the topic previously, my partner and I counted with which one made what we had agreed. We had spoken, but he authorized everything." (E.1)
    "I made a kind of will with my children's mom." (E. 7)
    A delegation about making decisions with instructions is given, when patients expressed previously the will so when the lost of the autonomy is presented who should assume the decisions, have the necessary information and can be sure that the patient's point of view was respected. This form of patients' participation in making decisions is better accepted than when definitively they are not allowed to participate in it.

It is necessary to sign. According to the participants, to make a decision related with accepting or rejecting the realization of an intervention means, "to sign" a paper. To allow patients to sign this paper when it is possible to make it, when they have the physical and mental conditions to make it is recognition to their autonomy:
    "I gave myself the authorizations, because if I didn't sign it, they didn't operate me." (E. 7)
    "To sign" the paper is an action that was carried out by patients, a person previously designated by patients or a family member who sowed up at the moment of deciding. However, in some occasions, the decisions on procedures and treatments were taken by a health team member. This form of patient's representation is advisable not only when they are not under adequate conditions to decide, but also when it is not possible to achieve the presence of a family member who should decide; but it cannot become a routinish behaviour because it supposes not to take in consideration the patients or their family decision:
    "When they operated me, him, my husband made the decision." (E. 2)
    "My sister was there so they did tell her "Do us the favour of signing this because it is necessary to do this urgently" and everybody told him ¡it is necessary to sign because it is necessary to save her!" (E. 2)
    Having the full cognitive capacity and being conscious are necessary conditions for making decisions. The inability to use the autonomy at the moment to decide, means that patients should have a reason, a specific condition that not permit them to participate in decisions:
    "If I had been very conscious, I had thought the thing, because I was gone." (E. 2)
    To be in use of the physical capacities the as to be able to speak and express the decisions are also required:
    "No, they didn't ask me because I was unconscious; besides, because I could not speak... my family already had thought that they disconnected me because I didn't react." (E. 1)
    The inability to decide awakes emotions and feelings on patients. In this aspect, a contrast is visible in the participants´ descriptions. In on one hand, the loss of the autonomy and being in the situation of not being able to decide and not to be kept in mind meant to be broken-hearted:
    "I became distressed for not being able to decide. It is that the owner of the life, the owner of the game is me and I am the less important one." (E. 6)
    The family assumes such important decision as the suspension of the treatments and conducting procedures, even when the patient's life it is in danger, in view of the fact that patients themselves cannot express their point of view due to the effects of the illness. In these conditions, the loss of the autonomy and the inability to decide mean also acceptance, when the decisions were made according to the previous dispositions imparted by patients and when their opinion and personal posture are kept in mind:
    "I didn't give it importance. I believe that they made everything very well. She signed and I thank her for all they made for me, which served me a lot." (E. 2)
    "I believe that he made the correct decisions, those that I in the case of him have taken." (E. 1)

To need of others. "To be sick is to experience the frustration of not walking, speaking, moving and caring by themselves when patients have gotten lost the physical capacity to make it"⁴ this position of Travelbee makes reference to the due physical limitations to the illness.
    These limitations take the patients to the dependence at physical level; that means that they person need other people´ help to carry out activities focused to get the necessities satisfaction because of the fact that they are not able to carry out them for themselves. The inability and the dependence provide difficult experiences and they are accompanied by anxiety, restlessness, insomnia, low self- esteem and misunderstanding. The dependence means, in terms of one of the participants "to be treated as a chicken, something horrible, terrible and sad" (E. 6):
    "Standing there depending on other people, for a very active person like I had been is very hard, very difficult. The most traumatic thing for me was the bath time because to be treated as a chicken, quickly, they moved you for all sides to a high speed, the thing is that you were not taken a bath really, you were all soaked and indisposed." (E. 6)
    It also means, to adapt to the form of proceeding of the person who patients depend; the fact that other people make what the patient cannot make themselves not necessarily means that the procedures were made according to the preference and pleasure of the patient who receives the action:
    "Really, that situation is difficult, but you manage it progressively. It is difficult, complicated but you realize that it is necessary. I cannot make something for my self at this time and I have to allow the person's who are around support me; but I don't stop recognizing that it is difficult because I could not make what I want, neither to go to where I want to go, when I want, but rather I will have to wait they take me and make what hey want with me." (E. 8)
    To be dependent under these conditions alters the self-image:
    "From being the most independent I became the most dependent because I was not able to speak. They had to do everything for me, everything, that was horrible, terrible. Undoubtedly I needed external help of other people. It generated me anguish to such a point that impelled me to do those things by myself alone. I didn't like that they had to weigh me, what I wanted was to come unfastened of people, to make things alone." (E. 1)
    The dependence of other people, that is given when the participants cannot assume the satisfaction of their own, means to be unable; but to have conscience about the dependence and the conditions that surround them can become a motivation with the purpose of achieving the necessary physical and mental conditions to assure the capacity to work by themselves.
    "You feel very bad, very unable not being able to do things by yourself, it is hard." (E. 2)
    "To me, my hands didn't go up. I could not eat, brush my teeth, and brush my hair. It was very important for me to depend on other people, of course, because I had not been able by my self alone and I thank them to him but all I wanted was to be alone, to know what I was truly needed of them and what I could make by myself." (E. 1)
    Not only not to be able to decide and not to be independent but also to ignore their decisions by members the health team members are conditions that contribute to the spiritual suffering of the patients; in the same way, the form of nurses proceeding when they carry out actions in order to satisfy the needs of the patients, not consulting their tastes and preferences or when they are carried out without considerations and affection can tribute to suffering too.

Discussion

    This study showed that to suffer a serious illness took the patients to "not to be capable to act" and "not to be able to decide". This made reference to the difficulty to carry out the necessary activities to satisfy the needs or to make the own decisions, due to physical or mental alterations caused by illness. Therefore, it was necessary the participation of other people in meeting needs. The dependence on other people, especially nurses, contributed to the difficult situation. On another side, the participants should adapt to the condition to be dependent on other people and accept their form of proceeding and carrying out the procedures. One of the participants describes the daily hygiene routine as if "they were bathing her like a chicken", that was reflected in uneasiness and annoyance.
    Nurses who work in ICU, for the achievement of a procedure with a patient in dependence state consult the descriptions consigned in the theoretical positions of nursing. But these theoretical contents should be adapted to the patients' pleasure and preferences, "to keep in mind patients´ point of view",¹⁷ because cultural aspects, patterns of answers to pain and annoyance and patients preferences could be in opposition to theoretical statements put on practice; not forget the point of view of them may contribute to the humanization of care.
    Madjar¹¹ outlines that nurses should overcome the consideration that the human being is a body that they look with distance and detachment; like something on which they put in practice their expertise and dexterity when examining, touching, manipulating, comforting or inflicting pain. They have to pass to treat human being as an alive being who has and feelings and participates of the good and bad thing of illness and treatment. Besides "nurses have to found their decisions on ethical principles, knowledgement and experience".¹⁸
    The possibility to decide was claimed by the patients when they were in physical and mental capacities to make it. In the contrary case, the decisions were made by a relative who had an appropriate knowledgement about the patients' way of thinking and proceeding or who had received previous instructions and delegation with instructions.
    It was also found that to decide regarding some procedure related with the care during the illness was limited to "to sign" a document. The own patient, a member of the family or a member of the health team carried out this action. To reduce the making decision process and obtaining of the informed consent to simply "to sign" is a position that is not according to ethical norms that outline that to sign an authorization requires of adequate cognitive capacity that permit patients to understand and also choose among options, besides the information and the necessary knowledgement about the matter to decide.
    With the height of the scientific evidence as it bases for the taking of the decisions is due to be careful, not only to consult this evidence but also the decision of the patients, so it is not reduced to the people to the condition for being average to corroborate or to implement the propose decisions with base in the evidence. Not to allow the patients to participate in the decisions, even though they have the physical and mental conditions to do it contributes it to the dehumanization of the care.
    It has been said a lot about making the decision on the care of the patients in critical state. Including law 911 of 2004 of the republic of Colombia¹⁹ regarding the informed consent that offers instructions for the nurses on the matter. To consider a due process for making decisions on these helps to advance towards the humanization of the care, that is a constant challenge for the nurses and the services of health.

Conclusions

    During an episode of disease, the loss of the ability to decide and to act are present. Nevertheless the dependence of the patients for the care and satisfaction of the needs are not conditions that the nurses must assume in automatic form. On the contrary, those must be evaluated and determine in each situation the real commitment with a view on respecting the patients´ rights and to offer the aid and the attendance that they require taking into account his decisions and preferences.
    To express the agreement and the acceptance in a certain situation does not consist of resorting to the simple action to sign a document, but that involves a cognitive process and of decision making, consulting rights and preferences and the capacity to choose among options that the people have. The fact to reduce the informed consent by simply to sign obeys more to the pretension of the institutions of health "to cover the back" as opposed to possible actions of legal nature and it is not focused to the respect of the autonomy of the patients in which it concerns with elections on treatments and procedures.
    In the atmosphere and routines of the UCI, although it is certain that there are technological components whose adverse effects on the patients are difficult to control, also is certain that in the human component there are aspects that can improve to contribute to that stay in a UCI is not more difficult due to the behavior of the nurses.
    The participants make reference to the form how the nursing procedures are carried out towards the meeting needs. The accomplishment of some of them was traumatic and more than being a contribution to the comfort and the wellbeing, they produced annoyances and discomfort. Although it is certain, that the Nursing discipline includes descriptions detailed on the form as the procedures are due to be accomplished, is not over to consult the patients´ taste and make efforts in order to be these procedures kinder. At the same these should be engage in dialogue and the necessary explanations, warm and simultaneously affectionate attacks so the patient can handle better, to help the people to face them greater the affability possible. "The nurses must reflect on their own practice, on the responsibility to be involved in actions that can hurt to the vulnerable people and without more options due to the disease and to the necessity of care" raises Madjar¹¹ in relation to the pain inflicted to the patients by the nurses during the care practices.

References

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17 Escudero B. El discurso de las enfermeras ante el cuidado de las personas mayores dependientes y sus cuidadores familiares. Index de Enfermería, 2006; XV(52-53): 46.
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19. Colombia. Ministerio de Protección Social. Ley 911-2004. Disposición en materia de responsabilidad deontológica para el ejercicio de la profesión de enfermería. Bogotá: Tribunal Nacional Ético de Enfermería.

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