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Abstract

Background: The introduction of advance directives (AD) require to examine the perspective their potential users have about. Any public policy about the implementation of ADs adressed to elders will fall if their perspective is unknown. Objective: To examine the elders' perspective about advance directives. Methods: Qualitative study. 40 elders, users of 3 Primary Health Care Center, and of 1 Nursing Home from Madrid. 5 focus groups were organized in 2004 April. Participants: 14 providers recruited 2-3 participants each. Age and emplacement (home or institution) were the variables considered as the most important for the discurse differences about ADs. They were used as segmentation criteria, looking for heterogeneity between groups, and homogeneity and heterogeneity intra groups. The discussion of each group last until no new concepts arose. Results: 4 assumptions source from groups: 1) Elder people prefer advanced care planning to only signed ADs. 2) Their opinion about ADs is linked to other events about the end of life. 3) They give a relevant role to their families. 4) They desire to control their lifes and decisions, but "without papers". Conclusion: The implementation of ADs through educational public policies  in elder population only will sucess if elders' perspective is considered.

Introduction 

     The Law 41/2002 for the regulation in our country of the "Previous Instructions" classically called "Advance Directives" (AD) took effect the 16th of May of the year 2003. The Article 11 of such law gathers together the definition, application and limitations of the Previous Instructions. Parallel to this national law, almost every Autonomous Region has developed its own jurisprudence concerning this topic. Using different terms, these laws define and regulate the document in which a person declares his preferences of cares and treatment in order to be fulfilled in the case he is not able to express them by himself. This legislative change demands from the health circles a deep reflection as well as a change in the relationship between the professional and the patients.
     Despite this legislative development, very little is known about the degree of acceptance of this kind of tools within the Spanish population^1-3 and professionals⁴. Nevertheless it seems important to know well this reality when attempting to popularize the usage of AD. If this is not the case, the enterprise will be heading to failure. Due to the rise in the life expectancy, the elder population is the sector in which the registration in the AD will be applied more frequently than in any other population group.  Taking this fact into account it seems essential to know the degree of acceptance of AD for this age-group, in order to design effective informative strategies. It is surprising that in the United States, after more than 20 years since the publication of the magazine Patients Self Determination Act, the elder perception about it shows that it has not been totally admitted. Their position could be summarized in three ideas:
     1.  Their opinion about the AD is directly related to their way to face the events at the end of life: inability and physical or mental dependency⁵, impressions about health and illness^6,7, preferences of life support^8-12, their own experience about hospitalization, old age and death. Knowing the elder attitude when facing these realities is associated to a bigger or smaller opening-up towards the usage of AD.
     2.  Elders with a good family relationship do not want AD as they trust the family's criteria. On the contrary, those who are not close to their relatives perceive it as necessary.
     3.  North American elders turn down "written papers". They prefer integral participation processes called "Anticipated Planning of decisions"^14,15. In those processes a bigger importance is given to dialog, to clarifying doubts and to expressing wishes than to the document's signing, which is very often rejected by elder people¹⁶.
     In Spain, in spite of an immense legislative blooming related to the issue, the situation is quite unknown. The current work explores precisely the level of acceptance of AD for one of the most implicated stratum in it within the Spanish population: the elder.

Participants and methods

Design. A qualitative research using discussion groups has been made. This methodology favors the participation on not highly explored topics, but topics with an important social implication. Data collected and analyzed help to build a theory which has been non-existent up to now. This sort of design is frequently used in researches concerning the planning of health or medical decisions.^17,18. 

Sample and participants. For the selection of the sample, the most characteristic social discourses about AD, the heterogeny within groups, and the homogeny and heterogeny inside each group have been taken into account. Groups were organized until the ideas expressed turned out to be recurrent.
     According to the literature review referred in the introduction, the age and proximity to the family, or the place of residence are the most influential variables to elaborate the discourses about AD. The criteria used for the construction of the groups are those gathered in table 1.
     The obtainment of participants was done in three Health Centres of Primary Care (HC) plus an Assisted Nursing Home (ANH) inside the Community of Madrid, during April 2004. Those two welfare services offer elders continuity in the attention, added to an integral approach to health problems very convenient for the aim of this research. 14 mediators -professionals from the HC and ANH- looked for a maximum of three participants each, in order to avoid biases of subjective selection. It was ensured that chosen individuals had no relation at all among themselves, apart from occasionally meeting in the Health Centres. They were informed about the research's aim; their socio-demographical data were collected and a document of informed consent was taken in.
     An "affectively neutral place" was searched for the meeting in order to avoid the participants' evocation of previous health relations or connections. The Institutionalized Elders were exempted from this requisite. The encounters took place in a school meeting room of the area: light, comfortable, quiet, with wooden furniture and comfortable chairs, provided with sockets, extension tables, and an oval table which optimized the meetings development. Participants were offered coffee and pastry added to a gratitude present at the end.

Meeting development. The meeting lasted 90 minutes. It was recorded and transcribed with the help of the program Sound Scriber. The same chairperson and observer guided all the meetings. 

Interview script. The research group considered the AD as not well known topic for the elders. They considered that its direct and explicit handling could have aroused feelings of strangeness and distrust among the audience. Due to this fact, the wider context of the end of life and dependency was first treated, in order to handle the AD afterwards.
     The research received the favourable ruling from the Autonomic Committee for Clinical Trials of the Autonomous Region of Madrid.

Results and discussion

     5 groups of  6-11 persons were created. 3 of those groups had non institutionalized elders: 2 groups with ages from 65 to 74 (G1 and G2), and 1 group with ages starting from 75 and older (G3). The other groups counted on ANH people (G4 and G5). The characteristics of the participants and the profiles of the groups appear in table 2. The analysis of the discourses was made without defining previous categories. The information was classified attending to a double criteria: the recurrence of the topics and their connection with the research's aim. The data showed by the elders' discourses can be resumed as follows:
     1.  Preference for the planning of decisions versus the elaboration of an AD. Groups G1, G2, and G3 considered not very useful the AD. Groups G4 and G5 found more advantages in it. Nevertheless, all the groups consider more important the personal and social process that surrounds the health decisions.
     2.  The elder's experience about the end of life is related to his attitude towards illness, the dependency or the ageing. Old age, illness, dependency and death arrive inexorably. Nevertheless they can be faced in different ways: they can be peacefully accepted as a reality which can be modelled by each one, or, as if the person was using an exorcist's swab, they can be rejected by denying their existence and effects. Participants expressed in both directions:
     - "Ailments do get in, but each one's temperament has an influence as well" (G21), "Years show off the way. In the past I used to seize my children and take them behind me. Now they go in front and I go behind (G23)". "I am no longer like I was at the age of 40, but I own another experience" (G33).
     - "If I had to depend on the others, I would find my life as an enormous, enormous slope" (G15). "I always leave the table being still a bit hungry. This will not happen to me because I try to prevent it. I live in a third floor and I use the stairs to go up" (G28).
     For both positions the worst possibility is not the physical but the mental handicap, which is a situation that some of the participants compare to death: "If you are semi unconscious, you are dead; an Alzheimer is a vegetable. Persons who loose their consciousness are dead" (G17).
     The ideas which come up when facing a potential situation of dependency can be summarized as:
     a) Rejection of physical suffering and prolonged death throes. Wish of passing away all of a sudden without pain.
     b) Preference for the quality of life and autonomy rather than for the prolongation of life.
     c) Rejection of being taken care of far way from their home and their beloved ones. Wish of living in an atmosphere of "confidence, humanity, love and respect" (G36).
     d) Wish of not disturbing others.
     3.  Family's decisive role. When someone is needed to take care of them or take a decision, they choose the family members. G4 and G5 add members of the ANH: director, pastoral agent, caretakers. For some of them, family should decide according to their own criteria. The ownership of the own life lasts as long as there is consciousness. When this consciousness disappears, the own body is not a manageable property for the owner, but for the caretaker. The delegation of the power of decision to the family is especially relevant for G3. "I can't tell my son: when this will happen to me, you have to do that. This would mean to impose a father's dictatorship. I prefer a decision coming out from his heart" (G31). "When I am not able to coordinate my life, I prefer my wife and sons to decide. I will not sit with them to discuss it. If I loose my head, I want them to do with me whatever they want to" (G37).
      For other elders, it is convenient to talk and express their preferences in order to make the decision making easier in the future. "This kind of things should be talked over during life. But it is not necessary to write it down. The family acts as a drive belt. The wife brings it out to the sister, the sister brings it out to her husband, and the husband does the same with the sons and daughters. Come it comes to make a decision, everyone knows it" (G14).
     The relatives displace the professionals to a secondary position. Two types of doctors' and nurses' participation in these health decisions exist:
     a) Technical participation: "The doctor is wise and he knows what this woman has inside, but he can not take the decision" (G33). "The nurse can not decide for you either" (G34).
     b) Support participation. The doctor and the nurse are "friends, endearing people, they rise the spirit".
     Only G3 and G4 give a singular relevance to the ANH professionals: "after all they are the ones who take us back and forth" (G43).
     4.  They have the wish of driving their own life, but "without written papers". Almost all the participants have first been caretakers. After their experience, they conclude that taking care of others without counting on their opinion is quite problematic. They settle that using the dialogue makes everything less painful and more appropriate. The predominant opinion about the AD is negative. A piece of paper turns out to be inadequate to express wishes. It is difficult to fit in words what will happen in the future. "I wouldn't sign anything. It is groundless. How could I sing a document stating the way to take care of me when I fall ill? I have no clue about what will happen to me!" (G25).
     G4 and G5 find it useful, because ANH workers "might move or change positions and they do not know what you have decided before" (G41).
     The key ideas which structure the discourse on AD are:
     a) The caretaker preferences are different from those of the elder. It is convenient to make an agreement.
     b) An adequate moment should be chosen to discuss the issue.
     c) AD is interesting but there is lack of training to use it. Families are not prepared. Health professionals are suitable to initiate and arbitrate a dialogue on the topic. 

Conclusion

     The findings achieved permit two reflections: 

1) It is fundamental to know the elder's opinion about AD. Figure 1 gives a resume of the four possible perspectives maintained by them. As Inman already underlined, these perspectives are linked to the acceptance of the dependence and to the possibility of directly taking part on it. Accepting dependency in a calmed and natural way helps to discover new possibilities. Taking part of it by planning and giving an opinion about the future cares favours control and autonomy. The elder's opinion about AD will depend on his position when reaching that crossroad. There are at least four kinds of perspectives:
     a) No acceptance of the dependency and difficulties. Contempt for any kind of intervention.
     b) No acceptance of the dependency, but  possibilities of intervention.
     c) Acceptance of the dependency but difficulties to face intervention.
     d) Acceptance of the dependency added to possibility and wish of intervention.

2) Educational programs concerning AD should take into account:
     a) Tackling the topics of old age, illness, dependency and death before facing AD, thereby identifying AD as a helpful tool in a situation perceived as a real threat.
     b) Knowing the topographical point in the referred graphical scheme were the elders being addressed are located.
     c) Identifying the underlying model of family and the attributions given to it, based on the elder's thoughts.
     d) Talks about the preferences regarding cares. Stimulation of dialogue with the help of trained professionals.
     e) Election of the adequate moment: an illness or a certain health deterioration.
      f) In case AD is rejected, the elder's wishes should at least be reflected in the medical record. Implication of the family in order to document those wishes using as many sources as possible if needed.
     The AD implementation by means of an educative and institutional strategy would be enormously benefited by previously taking into account the opinion of the elder Spanish population. 

Acknowledgements

     The splendid supports of Carlos Calderón and the Scientific Technical Committee of RIMARED have made possible this article.
     The Node of Ethics of RIMARED is constituted by Eva Abad Corpa, Jose María Barreiro Bello, Inés M Barrio Cantalejo, Apolo García Palomares, María Gasull Vilella, Carme Jover Sancho, Javier Júdez Gutiérrez, Sagrario Martínez Rodríguez, Olga Monistrol Ruano, María Jesús Pascau González-Garzón and Pablo Simón Lorda. The Coordination Team of RIMARED is formed by Inés Barrio Cantalejo, Julio Cabreo García, Pilar Comet Cortés, Carmen Fuentelsaz Gallego.    

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