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Abstract

After five years  of investigation in San Jorge Hospital (Huesca) and Can Misses Hospital (Ibiza) I have finished my thesis. I received the "cum laude" qualification and won the Grifols Foundation research prize. Nevertheless many questions are left unanswered, which cannot be explained using scientific rules, and which i do not want left in the air. I cannot forget what the 102 patients gave to me and what I owe them.

     When I was a family resident at the Hospital of Saint George in Huesca I was on duty two times per month at the department of internal medicine. After having been on duty, the workmates would meet and value their working day based on of the number of deceased. We felt a strong responsibility and guiltiness because of that. In order to avoid it, we had to do all what it was on our hands to avoid deaths. However, even though our fears and efforts, there were patients that had to die and died. Maybe in those circumstances our efforts should have focused on dignifying those moments and supporting the families. We realized there was a lot we could do for those without hope. By chance, the chaplain of the hospital gave us the rights of terminal patients that the Catalano Balearic Society of Palliative Care had drawn up. That way we discovered a number of needs that were formulated in that document. We then wondered how those rights were fulfilled at our hospital. In order to check the situation at our work place we did a survey with a semi-structurated open interview to distribute among our patients.

WELCOMING. I would introduce myself to the patients as doctor of the Hospital and explain them that I was trying to find out about certain aspects of their stay at the institution. My wiliness to listen and pay attention to the patient's opinion was determinant to gain their confidence and not a single patient refused to participate in the study.  Ana said that it was the first time someone would show some interest for those sorts of issues. They have done blood test to her; they had measure her body temperature, her tension.but never asked her for her wishes. And like Ana,  all the patients took this opportunity to share their thoughts and impressions to that person that was willing to listen. No symptoms were a handicap for these conversations.  In the middle of a conversation with Joaquin the nurse came to take him to do an x-ray. He argued that he was coughing a lot and asked the nurse if he could come again later. I asked him if I should also leave and return some other time but he wanted to continue talking to me. He needed to talk more he needed the x-rays.

It is important to underline that 15, 59% of the interviewed terminal patients had brother and nephews as their closer relatives and 12, 44% had no relatives at all. In general, they all have few visitors and they needed to talk. Maybe we should pay more than a simple medical visit to the patients and accompany them on their last moments.

During our dialog, I lost my roll as a doctor and the interlocutor as the patient enhancing the human nature of our conversation; there was no space for identification labels or the pathology of the patient. That has been one of the aspects with the least score in the survey, which makes sense if we take into account the interest of the interviewer on extra sanitary issues and personal needs; an understanding of the believes of the patient; and listening to the discourse. If medical care and symptomatic control has a very high rate, all what goes over physique theories fails. For example, congratulating the patient on the day of her or his birthday can have a positive effect that we can not even imagine.We are maybe the first, the only or the last ones to congratulate them.

INFORMATION. The management of information is a topic under permanent discussion. We are used to first get in contact with the family in order to see what we tell the patient. Thus, even if 67, 6% of the patients would ask, only 41.18% would be fully informed and 13.73% only partly. 32.35% would be undefined and 12.75% would have received ficticial information.

Something that also should not happen is what Enrique is going through. When talking to him he said: "I am old, and I know that I am sick and that I will not live long.but please, do not tell my family". After having left the room, I talked to the family and his daughter told me: we know how sick he is, but please do not tell him. If they all knew the secret, why do not telling each other, sharing their last days together and saying each other what they think?

Patients are familiar with this and do not find it weird. They might be suspicious and realize what is happening by the silent of their relatives, the grin of seriousness, their own symptomatology or their need to remain in the hospital. 75.5% of the interviewed were more or less adapted to their illness process. This number was higher among those that knew what their real situation was in comparison with those that did not know the truth. Angel expressed this way to be "ready" by saying "I already did my luggage, so I am ready when they tell me so". Francisca said it in a different way: "I do not think that what I have is good, but I am ready". I did not find fear to death among those I interviewed but fear to suffer. In any case, we can not say that all those who were informed of their illness were prepared to accept the consequences. Many were not ready. Thus, it is not clear whether it is better to tell or not tell the patient, but that we have to get closer to the person to know and discover what he or she needs.

GOOD BYE. Good byes used to be long after having finished with the interview. I would shake their hands but they would still try to keep me there. They were maybe aware of the little time they had left and fear they would no have more chances to share something they have not told their relatives or doctors. This need to say good bye was so obvious that José, a man of strong character and a difficult relationship with her wife wrote on the mini-mental test "I love my wife". Those were words that he had probably not said to his wife in a long time.

It is also hard for me to say good bye. Even though we did three interviews per patient to validate the outcomes of our research, I did not know if I would see them again. I remember that when I said good bye to Juan before going on holidays he lifted his thumb up: the roman sing for life. I though of the wishes of this patient: wishes of life, of fight, of hope.and I felt scared because one day all those dreams would be over. We could not save him, but we could do a lot to dignify his last days as the rights of the terminal patient tell us to do. To Juan, Santiago and all the others I could not say good bye to, I would like to dedicate this thesis. I hope we can say and do what we have to in life. This is one of the things I have learnt.

Notes

The names used in this article are not real, although the situations here described are real.

The thesis "Evaluation of the rights of terminal patients in a general hospital", was published in 2003 by the Institut Borja of Biotechnique through the editorial Mapfre.

Acknowledgement

I would like to thank all my workmates of the Hospital Saint George of Huesca and Can Misses of Ibiza for their support and help; particularly my director (Dr. Miguel Montoro) and the chaplain of the Hospital of Saint George (D. Pedro Abad)

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