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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 inthe field of personal decisions relating to health, there has been little progress inrecent 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 thepercentage of patients who have been reflected in writing his will in relation to life,its position on cardiopulmonary resuscitation or have appointed a representative tothe case of disability is very low and this situation has not improved substantially inrecent years.1-3.

Advance care planning (CAP) involves the development of a process thatintegrates information, intercom, reflection and decision. and taking into accountthe cultural characteristics of the patients4. The CAP requires the sharedparticipation 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 thepossibility of conservative treatment or testing and treatment to receive, whereappropriate, palliative care. Without all this information discussed and shared isvery difficult for the patient to take a decision adecuada5. The existence of theadvance directive (DVA) may be important in some patients such as those who areincompetent and who questioned whether or not dialysis, permanently unconsciouspatients with serious and irreversible dementia, unable to cooperate in dialysistreatment or to interact with the environment, with limited life expectancy forterminal illness or lung disease, liver or heart in the final stages, confined to bedand who need assistance for living activities diaria6. On the other hand, the

decisions taken should be reflected in the patient's medical report should beperiodically reviewed and confirmed or changed by otras7-9.

The American Registry, between 15 and 25% of deaths are caused by dialysiswithdrawn, mortalidad10 second cause, and only between 6 and 51% of patientshave a DVA11. In our country, very little knowledge we have about the percentageof 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 toreceive CPR and there is a withdrawal of hemodialysis of 0.3 patients per 100patients / year. These figures clearly do not reflect the current status of our unitsdilisis13. The Register of the Spanish Society of Nephrology (SEN) of 2009 (not

yet published data), the 6.24% of patients die because it involves psychologicaland social withdrawal of treatment.

In 2007 a study was conducted at the Hospital Parc Taul that was the firstapproach to the issue of advance directives (VA) in our medio14. This studyreflected the situation in a single center of Catalonia and urged, therefore, to knowthe reality in different centers of the country and the autonomous communities andour patients know what you think about all these important issues in your life.

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Professionals need to know what are the values and wishes of our patients todecide the same friendly manner.

With this objective, a survey which contained issues relating to the implementationof 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 theinformation recorded reflects a reality that must be known by the professionalsinvolved in caring for these patients. This study provides a picture which showsthat our patients when asked about major life issues have pretty clear ideas, butthey are not adequately reflected in our medical records.

This study had several objectives: first, find out the degree of knowledge of theDVA, what percentage of patients had given effect to the document or hadappointed a representative in writing or verbally. Second, explore, after theinformation received, the level of demand and acceptance of the implantation of aVAD in dialysis units. Third, know what the position of patients on dialysis withregard to decision-interventionist attitudes to health situations with disability limitsfor decision-making. And finally, consider whether the patient's clinical status, age,sex, time on dialysis, autonomy, ability, family status or educational level determineits 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.

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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 presenceor 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

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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 comorbiditywith 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 higherpercentage 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

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presence of depression or degree of training conditioned to this variable. Only correlation

with visual deficits (p

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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 andhave 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 wereunable 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

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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.