This is a picture of Francisco de Goya, two villains fighting in a bleak landscape. The weapons were sticks and there were no rules and protocols. The duel ended with the death of one of the contenders and usually with the other wounded. The landscape in the background is empty, which accentuates the loneliness and the brutal nature of the situation.
Is this scenario in which our patients die in intensive care units?. Are there rules and proper protocols that enable standardized attention to end-of-life patients?. In short: how do patients die in the ICU? and how is this proccess live by relatives and how is the immediate mourning?.
There are numerous questions that have been raised regarding the end of life care. There is no doubt that death of a loved one is a painful experience and more if fits in a so tech environment, such as intensive care units.
This issue caused us a great interest and curiosity, so we began to research on it. We realized that there is a lack of guidelines or protocols that enable standardized attention to end-of-life patient in these units which is compounded by a shortage of scientific literature in our country about the topic. This shows the long road that we need to walk to get the level of attention that the terminal patient and their relatives receive in other environments where it has already adopted the model of care focused on the patient and the family.
Because all of this, we thought we needed to start at home (ICU of Hospital Royo Villanova, Zaragoza).
So we have designed a project that aims to meet the subjective experience of the family about the death of a loved one in our unit.The reality that we are interested in is the one that people study perceive as important and meaningful.
The overall objective of the study is to know how the family lived the end of life of their relative.
We developed a new questionnaire that was sent to the family home by postal mail, three months of the death of the patient.
This questionnaire consists of 18 questions, 17 of them closed and one open. It also includes the age and relationship with the deceased of the person who completed the questionnaire. 18 questions collect information concerning medical care and nursing, information received by family members throughout the process, aspects relating to decision-making and autonomy of the patient, care, spiritual character, adequacy of the physical space for the accompaniment and the satisfaction of family members with the care received.
The questionnaire is accompanied by a letter of condolence that explains the reason of the study, the form of filling it and the guarantee of confidentiality of the information obtained from their responses.
The field of study is the ICU of Hospital Royo Villanova of Zaragoza . The study population are the relatives of deceased in that unit during 2013-2014 and who meet the criteria for the inclusion of age (over 18), stay (more than 48 hours between the income and the death), visits (patients who receive visits during admission) and cause of admission (the patients admitted by autolytic attempt are discarded).
We are currently shipping the latest letters of 2014. After the phase of shipping and collection of letters, we will proceed to the statistical analysis of the answers.
With this research work, we expect to know how the picture we painted is in the ICU about end of life care. We don´t want our picture have entitled “Duel with sticks” and that the landscape would not be desolate and empty. In this picture we want “paint” both the family as the interdisciplinary team and the patient, and our brushes would be respect, dignity and humanity.
Yolanda García García.
ICU Nurse of Hospital Royo Villanova.
Member of the Committee on Bioethics
Miguel Angel Pelay.
Nurse at EAP Sta. Isabel. Zaragoza.