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EVALUATION OF THE OPINION OF PATIENTS WITH CHRONIC KIDNEY DISEASE ON DIALYSIS IN THE END OF LIFE AND ADVANCE CARE

PLANNING INTRODUCTION

Despite social and legislative initiatives for the promotion of personal autonomy in the field of personal decisions relating to health, there has been little progress in recent years in the implementation of care planning processes of the end of life . Very few centers have developed a process of advance care planning and the percentage of patients who have been reflected in writing his will in relation to life, its position on cardiopulmonary resuscitation or have appointed a representative to the case of disability is very low and this situation has not improved substantially in recent years.1-3. Advance care planning (CAP) involves the development of a process that integrates information, intercom, reflection and decision. and taking into account the cultural characteristics of the patients4. The CAP requires the shared participation of doctors, patients, families and, if the patient is not autonomous legal representative. The patient must know the characteristics of their disease, treatment options, prognosis, the consequences of not starting treatment and the possibility of conservative treatment or testing and treatment to receive, where appropriate, palliative care. Without all this information discussed and shared is very difficult for the patient to take a decision adecuada5. The existence of the advance directive (DVA) may be important in some patients such as those who are incompetent and who questioned whether or not dialysis, permanently unconscious patients with serious and irreversible dementia, unable to cooperate in dialysis treatment or to interact with the environment, with limited life expectancy for terminal illness or lung disease, liver or heart in the final stages, confined to bed and who need assistance for living activities diaria6. On the other hand, the decisions taken should be reflected in the patient's medical report should be periodically reviewed and confirmed or changed by otras7-9. The American Registry, between 15 and 25% of deaths are caused by dialysis withdrawn, mortalidad10 second cause, and only between 6 and 51% of patients have a DVA11. In our country, very little knowledge we have about the percentage of patients who die because they refuse to withdraw or enter dilisis12 program. We DOPPS data in which only 0.6% of patients have reported they do not want to receive CPR and there is a withdrawal of hemodialysis of 0.3 patients per 100 patients / year. These figures clearly do not reflect the current status of our units dilisis13. The Register of the Spanish Society of Nephrology (SEN) of 2009 (not yet published data), the 6.24% of patients die because it involves psychological and social withdrawal of treatment. In 2007 a study was conducted at the Hospital Parc Taul that was the first approach to the issue of advance directives (VA) in our medio14. This study reflected the situation in a single center of Catalonia and urged, therefore, to know the reality in different centers of the country and the autonomous communities and our patients know what you think about all these important issues in your life.

Professionals need to know what are the values and wishes of our patients to decide the same friendly manner. With this objective, a survey which contained issues relating to the implementation of the DVA and the values and wishes of patients in various departments of nephrology. Although this is a timely collection of information, we believe that the information recorded reflects a reality that must be known by the professionals involved in caring for these patients. This study provides a picture which shows that our patients when asked about major life issues have pretty clear ideas, but they are not adequately reflected in our medical records. This study had several objectives: first, find out the degree of knowledge of the DVA, what percentage of patients had given effect to the document or had appointed a representative in writing or verbally. Second, explore, after the information received, the level of demand and acceptance of the implantation of a VAD in dialysis units. Third, know what the position of patients on dialysis with regard to decision-interventionist attitudes to health situations with disability limits for decision-making. And finally, consider whether the patient's clinical status, age, sex, time on dialysis, autonomy, ability, family status or educational level determine its position on the DVA or their attitude the end of life.

PATIENTS AND METHODS Respondents were patients with chronic kidney disease stage V in active program of dialysis (hemodialysis, peritoneal dialysis or home hemodialysis) selected in a hospital or in a peripheral unit for dialysis. The application for participation in schools is done through the Secretariat of the SEN, which corporate mailed the offer to participate to all members. The centers expressed their desire to participate received the documentation. The survey was provided to patients by the nephrologist in charge of your treatment. The documentation provided to the patients consisted of three distinct parts. 1. I document contained "explanatory information on the nature and significance of the advance directive" (Annex 1). Underlined the intention that the DVA was part of a complete process of information, participation and continuous decision and updated in the patient and family participate, what is known as "advanced care planning." The realization of an ADD and the process of reflection and information involved and allow the knowledge of the values and desires of the patient, in order to influence future decisions affecting them, respecting their autonomy and facilitating the effective exercise thereof. He explained what was the legal holder of the DVA (Law 41/2002), the right to information concerning health and autonomy of the patient and clinical documentation. This law follows in the footsteps of the ninth article of the Convention on Human Rights and Biomedicine of the Council of Europe signed in Oviedo in 1997. The patient received information about the procedure to be followed for filing an ADD: content, legal requirements and processing.

2. The paper II was a "Questionnaire on knowledge and acceptance of VAD in patients on dialysis and patient's views on specific situations that might require the decision-making on vital issues" (Annex 2). This questionnaire consisted of 14 questions (some of them with several sections) which is answered affirmatively, negatively or not answered. A first group of questions explored knowledge about the DVA, the degree of formalization, the presence or absence of communication with family members on vital issues and the appointment of a representative. Then he wondered about what would be the hypothetical patient's wishes about medical interventions (mechanical ventilation, enteral feedings, dialysis and cardiopulmonary resuscitation) in cases of irreversible coma, persistent vegetative state, irreversible dementia or severe disease untreatable. And finally, there was a third group of questions relating to whether the patient would like to make a living will, under what circumstances and whether they should or should not offer all patients on dialysis and when. He wondered also if the survey had answered the patient independently or with assistance. 3. The paper III comprised a group of "questions to assess the patient's general condition and physical condition at the time of questionnaire response" and data on age, sex, time and mode of dialysis and level of education (Annex 3). 4. Finally, the fourth document was addressed to nephrologists in the unit and he asked about the number of patients receiving dialysis unit, whether it was hospital or community acquired, how many patients had been given the questionnaire and how they had answered. Statistical Analysis In order to use the answers related to patients' wishes about medical interventions, we decided to establish a scoring system that allowed classifying them into three categories: patients who wished to limit the therapeutic effort; patient who did not wish to be limited, and patients who did not manifest themselves clearly. The reliability of the classification was quantified by calculating the Cronbach alpha statistic (0.835). Subsequently, we studied the relationship between the three categories of "desires" of patients with quantitative variables by analysis of variance and qualitative variables using chi square. As summary measures used mean and standard deviation for quantitative variables and qualitative perform the calculation of proportions. RESULTS The survey was conducted in the second quarter of 2010 in seven hospital dialysis units they had, at that time, a total of 416 dialysis patients active. The questionnaire was given to 265 patients, of whom 154 responded (58.11%), and 69.2% said they had responded without help. The characteristics of patients at the time of the survey are shown in Table 1. The patients interviewed had a mean age of 61.91 15.20 years, male-dominated 64.5

35.4%, mostly without active working life (82.1 versus 17.1%) and had a time average dialysis program of 42.33 57.53 months. The representation of the sample with respect to the dialysis modality was consistent with prevalence data from SEN Registry (89.6% hemodialysis, 9% on peritoneal dialysis and 1.4% in home hemodialysis). Most of the patients lived in a family environment (88%), 6.3% lived alone, 1.4% with a companion unfamiliar and 2.8% in nursing homes. These were patients with a high rate of comorbidity with frequent admissions (23.4% were hospitalized once, 12.1% twice, 8.5% three times, and 0.7% four times in the past year). The degree of autonomy of patients to perform daily activities was limited: 20.9% were done with difficulty and 7.9% needed assistance. The same was true for instrumental activities of daily living (using the phone, shopping, meal preparation, cleaning, etc..), 29.7% were unable to develop without assistance. There was a high percentage of patients with impaired eyesight and hearing, which was not corrected with glasses (27.1%) or hearing aid needed (37%). Only 15.1% had urinary incontinence, although this is a fact of little relevance in patients with chronic kidney disease (CKD) on dialysis with a long time and probably with little residual diuresis. The patients had resistance to talking about their education and 38% did not answer this question. The patients had a positive perception of your stay on renal replacement therapy and felt that dialysis had improved their quality of life (84.4 vs. 15.6%). 89.1% said that if I had to start dialysis do it again. Was struck by the large number of patients who showed symptoms of sadness, depression or hopelessness. Concerned that in recent weeks they had felt depressed at some time during several days (27.4%), more than half a day (5.9%) or almost daily (9.6%). The percentage of patients who declared having an ADD was very low (7.9%) and was lower than the percentage that was formalized by a notary (5.3%) or believed that he had expressed his will before witnesses (6.6%) . When asked if the patient had trained someone else to represent you if they are unable to express their will, we find a higher percentage of positive responses (60.9%), and 40% of patients had been given to this individual capacity to decide. Patients understood that the person they represented was close and understand your wishes properly (70%). In fact, 58% was a partner and 38.8%, another family member. There was little confidence to delegate this role to other actors as a doctor, friends, priests, etc.. A high percentage of patients had spoken and expressed their views on the measures taken in the event of permanent coma to be more specific ventilation (40%) and had verbally expressed his representative. Patients had a clear idea about your wishes in situations such as coma or vegetative state insoluble and 65% did not want it apply mechanical ventilation or tube feeding or continue on dialysis, or resuscitation in case of stop cardiorespiratory (Table 2). The same situation happened in the case of irreversible dementia and severe disease untreatable, situations in which most patients pose limited therapeutic options and not aggressive. When analyzing the "variable position" by bringing together individuals who responded in the same way two or more questions (Table 3), we found that neither demographic, or social and labor conditions, or time or mode of dialysis, or the degree of comorbidity measured by the number of admissions in the last year or the

presence of depression or degree of training conditioned to this variable. Only correlation with visual deficits (p <0.006), auditory (p <0.006) and presence of urinary incontinence (p <0.01). This reflects a high level of consistency in responses, which are fairly uniform and independent of the patient's condition at the time of the survey. Although most patients are clear about what they want, the reflection of these desires in a document is very limited. When asked if they would make an ADD, half do want (54%), but a percentage of 43.7%, no. In the same proportion believe that the DVA should be done before going on dialysis (51.6 versus 48.4%), although most felt that should be offered to patients who ask (65 versus 34% .) DISCUSSION Despite legislative efforts and the various Societies of bioethics in Spain to develop the legal framework and culture that facilitate the implementation of the DVA, the degree of knowledge and dissemination of data is very limited among the general population. The existence in the hospitals of protocols to facilitate decision making by patients about end of life would be useful for patients and simultaneously help medical personnel and family members in making decisions. The CAP involves not only the completion of a VAD, but the introduction of a more complex process that requires the active participation of patients and families after receiving adequate information and training for decision-making. This process must be defined in its methodology and objectives and be actively supported by the health institution as a whole (including medical and non medical staff) responsible for comprehensive patient care. No wonder the poor knowledge of our patients on VAD as it is similar to that of the general population and the absence of a PAC that remedy this deficit does not help solve it. Despite the lack of reflection in writing from the VA, many patients express in the survey have talked and discussed issues related to the care of end of life with people you trust (usually close relatives). However, these alleged intentions are not clearly spelled out specifically or have been identified nor has appointed a representative to the interpreter. This is apparent in routine clinical practice in which decisions about the end of life lies in a family is overwhelmed and compelled to decide on behalf of a relative, non-self then, without having clear the patient's wishes and without a designated representative with a mandate spelled out above. Despite this lack of reflection documentary, our patients have a fairly clear idea of your desires and expectations, and their position on certain life-threatening situations related to life. In the survey, the majority of patients express their rejection of aggressive action in case of situations of serious illness is not curable or lack of ability to decide. The existence of a VAD is important in patients incompetent. However, it is more likely that those patients who have been reflected in writing their wishes respected his will finally see (96.2 vs.

1.9%) 15,16. Although patients appreciate being on dialysis and do not regret starting treatment with this therapeutic alternative, they are sure they do not want to stay with it over all circumstances. These results contrast with those collected by Davison in Canada recientemente17, which showed that 61% of patients regretted having started dialysis and have become more concerned by the desire of physicians and family of their own free and less than 10% showed that they had had a discussion about end of life with his nephrologist in the last 12 months. The Statute of the patient collects a clear need to respect their wishes, both in the choice of treatment and the possibility to modify or withdraw it. The survey results show that many of our situations in clinical practice could be simplified or optimized if the willingness of patients to be clearly spelled out to patients and health care. You can not underestimate the existence of some resistance to the completion of an ADD, possibly due to ignorance, but also by a certain distrust with the consequences. Could there be a suspicion that less interested doctors or restrict the necessary and effective treatment if they were collected prior written drug treatment. This is an aspect that clearly could be improved with accurate information through a PAC regulated. However, it must respect the patient's will not be informed or not show up and removed from the survey data show that there are discrepancies on the time to do an ADD. Note that the vast majority of patients consider to be offered only to patients who specifically request it. The patient takes a position on limiting care in certain situations, is conditioned by their values, previous experiences, their own or others, and personal expectations about the suffering and quality of life. Due to the influence of these factors every individual is a unique entity in itself and has its motivations and expectations and, therefore, we were unable to establish patterns that define types of patients or comorbidities or demographic variables that are associated with a given position. In the previous study Catalua13 itself is appreciated that older patients were more likely to seek treatment limitation, nor were differences in relation to sex, comorbidity, education, language or nephropathy base. Other authors describe a higher percentage of do not resuscitate orders in some groups (elderly, institutionalized and more comorbidity) 12 or in white patients with regard to afroamericanos3. In our patients only shows a tendency to limit care to those with higher sensory deficits, but not with comorbidity. Although a high percentage of patients show depressive tendencies they are not more frequent in patients with poor general condition, measured indirectly by the number of admissions in the last year or over time in dialysis therapy, which is accepted by most as favorable. Neither the presence of depressive tendencies is associated as a more favorable position to limit care. In short, knowledge and implementation of the DVA is very limited in our dialysis units, which demonstrates the need for CAP protocols. Our patients, despite not having written reflected or explicitly their desires, have a clear position regarding the establishment of aggressive care in extreme situations the end of life. We need to nephrology teams

develop skills and information protocols, training and data collection and custody on the last will of their patients so that patients who wish to see provided respect for their decisions, if loss of autonomy.

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