1NéphrologieImmunologie Clinique, CHRU Bretonneau, Tours, 2Centre de dialyse, Clinique Maison Blanche, Vernouillet, 3Centre de Néphrologie, Châteauroux, 4Néphrologie, CHG, Bourges, 5Centre dhémodialyse, Clinique Saint Côme et Saint Damien, Blois, 6Service de néphrologie, CHR, Orléans, 7Centre dHémodialyse de lArchette, Olivet, 8Clinique dhémodialyse Jeanne dArc, Gien, 9ARAUCO, Tours, 10Service de Néphrologie, CH, Chartres and 11AIRBP, Chartres, France
Correspondence and offprint requests to: Béatrice Birmele, NéphrologieImmunologie Clinique, CHRU Bretonneau, 2 boulevard Tonnellé, F-37044 Tours, France. Email: b.birmele{at}chu-tours.fr
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Abstract |
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Methods. We assessed the cause of death, and the medical and social characteristics of chronic dialysis patients in a French population who died in 2001. We compared patients who died after withdrawal from dialysis and patients continuing dialysis until death. We determined the decision-making process when dialysis was withdrawn.
Results. In a population cohort of 1436 dialysis patients, 196 died (13.9%). Of them, 40 patients (20.4%) died following withdrawal from dialysis. This was the most common cause of death, followed by cardio-vascular disease (18.4%). Patients withdrawing from dialysis had a significantly higher rate of dementia (17.5 vs 6.4%, P = 0.02), a poor general condition (55 vs 15.4%, P < 0.001), and were dependent in their life for everyday activities in comparison with patients who died from other causes. They were not different in age, sex, duration of dialysis treatment, dialysis technique, cardio-vascular disease, diabetes, stroke or cancer, but the sample size was small. Treatment was more often removed in patients with severe medical complications and/or cachexia (90%). The decision to stop dialysis was made most often by a physician (77.5%).
Conclusion. Death after withdrawing from dialysis was the most common cause of death in ESRD patients in our French population cohort. The patients who died after discontinuation of treatment were more often in a poor general condition, near the end of life, and most often the physician decided to stop dialysis treatment.
Keywords: end of life; end-stage renal disease; epidemiology; withdrawal from dialysis
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Introduction |
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Practices in North America and the UK appear to be different from those in the rest of Europe. Withdrawal from dialysis was a major cause of death in ESRD patients treated by dialysis in the US and Canada. Indeed, for 1226% of these patients, termination of treatment was the cause of death [17]. However, in Europe, particularly in France, withdrawal from dialysis was the reported cause of only 27% of all deaths [4,8,9].
The aim of this study was to assess the condition of patients and the outcome after dialysis withdrawal in a French population cohort (Région Centre). We determined the number of deaths after discontinuation of dialysis and the medical and social conditions of the patients in comparison with patients who died when dialysis sessions were continued until death. We evaluated factors influencing withdrawal from treatment and the decision-making process.
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Subjects and methods |
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Clinical data
For each patient who died, a questionnaire was completed by the same investigator for all units during an interview with at least one doctor and one nurse of the unit. They used the notes and the medical record of the patient. The cause of death, the date of the last dialysis session and the date of death were examined for each patient who died. Death was considered to be secondary to dialysis withdrawal when the patients lived for >3 days after their last haemodialysis session, or for >7 days after their last peritoneal dialysis procedure [1,10].
The following data were also obtained: age, sex, age at start of dialysis treatment, technique of dialysis (in-centre haemodialysis, self-care unit haemodialysis, ambulatory peritoneal dialysis), the cause of the renal failure, the co-morbid conditions, including diabetes mellitus, severe peripheral vascular disease, severe heart disease, cancer and dementia. We calculated the Davies score, a semi-quantitative co-morbidity scoring [11]. Social and living conditions as well as functional status were considered: where the patient was living (home, rest home or medical institution), family status (living alone, living with spouse or relatives), if the patient was dependent in mobility and for basic activities of daily living (getting up, washing, dressing, eating, ...). We compared the data between two groups of patients: one group with the patients who died after withdrawal from dialysis and one group with the patients who died from other causes and whose dialysis sessions were continued until death.
Clinical notes made by physicians and nurses were carefully reviewed concerning the patients who died after withdrawal from dialysis, particularly the presence and the type of complications when dialysis was stopped and the interval (days) between the last dialysis session and death. Physicians and nurses were questioned about the history of the end of life for these patients. The decision-making process for each patient who died was analysed in each dialysis unit. In particular, we reviewed who initiated the discussion about withdrawal from dialysis, who made the final decisionthe patient, his family, the physician or the medical communityand the specific reasons for this decision.
Statistical analysis
Results are expressed as mean±SD for quantitative parameters and percentages for qualitative parameters. Median and range are also presented when the distribution was not Gaussian. MannWhitney test was used for the comparison of quantitative parameters. 2 and Fisher's exact test were used for the comparison of percentage as appropriate.
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Results |
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After the last session of dialysis, the mean survival rate was 8.5±4.8 days (median 7 days, range 421 days).
General characteristics of the population
There was no difference in sex between the two groups (Table 2). Patients were almost exclusively Caucasian. The age of the patients in the two groups at the time of death was not significantly different. At the time of death, the mean age of patients stopping dialysis was 77 years (median 79 years, range 4694), and of patients continuing dialysis until death was 72 years (median 74 years, range 4101).
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There was no difference between the two groups in the type of dialysis technique (haemodialysis or peritoneal dialysis, and in-centre or self-care unit haemodialysis). There was no difference between academic and private dialysis units.
Medical history
There was no difference between the two groups in the aetiology of renal failure (Table 3).
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How was the decision to withdraw dialysis made?
Four patients decided themselves to stop treatment. The physician, the nurses and their family had not suggested this decision. Two of these patients would not continue the treatment because they had become dependent for their everyday activities and needed hospitalization in a medical institution. They chose to withdraw dialysis treatment and subsequently died. One patient had never accepted dialysis treatment despite the fact that he had no medical complications, was not dependent and was not depressive. For the medical team, the patient was competent and able to decide for himself. He stopped 6 months after beginning dialysis treatment. One patient failed to come to his last dialysis session. He was non-compliant and on several occasions had failed to come to the dialysis centre for his treatment.
In all other cases the decision to terminate treatment and withdraw dialysis was made because the general state of the patient had declined: cachexia and weakness in 23 patients, severe peripheral vascular disease in four patients, severe cardiac failure in one patient, dementia in seven patients, pancreatitis in one patient. When the patient was conscious and without dementia, he was invited to participate in the discussion and the decision. In 32 cases, the patient was not able to participate in the decision to withdraw dialysis: seven patients had dementia and 25 patients were not conscious or were too weak. No patient had given advance directives.
In five cases the family initiated the discussion and made the decision about treatment termination, which was accepted by physician and nurses of the dialysis unit. In four cases, the nursing and medical staff of the patient's unit initiated the discussion and decided to withdraw dialysis. In 27 cases, the discussion was initiated by the nursing and medical staff of the dialysis unit: the decision was made with the patient and his family or relatives in four cases, with the family or relatives in 14 cases. In nine cases the decision was made by the nursing and medical staff alone.
The decision-making process in dialysis units
We studied how the decision was made in the 11 dialysis units.
The discussion could always be initiated by the patient or his family and by nurses and physicians of the hospital or rest home where the patient was staying. In the dialysis units, the question of continuing or stopping dialysis treatment for a patient who was weak and in poor general condition could be asked by dialysis physicians in seven units, by nurses in six units, and was never asked in four units.
The decision to terminate treatment could always be made by the patient and/or his family or by the medical staff of the place where the patient was staying. The procedure of such a decision in dialysis units was not the same in all units. In seven dialysis units, the decision was made by the physicians after discussion with the patient and his family when it was possible. In four of these seven dialysis units, the question of stopping treatment was systematically discussed by the nursing and medical staff. The final decision to withdraw dialysis was made by the dialysis physicians. In four dialysis units, the physicians did not make any decision to withdraw dialysis, but accepted to withdraw dialysis when the decision was made by the medical staff of the unit where the patient was staying.
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Discussion |
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At the time of death, the age of patients stopping treatment was not different from the age of patients in which dialysis was not withdrawn. This was found also by Husebye [10], but other studies found that the age of patients who died after termination of treatment was higher than the age of those who died from other causes [2,3,6,15]. However, the percentage of patients withdrawing from dialysis treatment increased in the older population as was shown previously by several authors [5,10,16,17].
The mean time of dialysis treatment was similar in patients of both groups, but significantly more patients who discontinued dialysis died during the first year of the dialysis programme, as also shown previously [5]. This was not surprising: terminal renal failure is only one element of medical complications and of poor general condition in older patients. These multiple medical problems can be present at the beginning of dialysis and can lead to a rapid alteration in physical state and to the decision to terminate treatment.
Patients discontinuing dialysis had no more medical complications than patients continuing dialysis until death. But they were significantly more often in poor general condition and were more likely to have cachexia. In contrast in other studies, patients more often had associated pathologies such as diabetes mellitus, vascular disease, cardiac disease or cancer [1,5,6,1416,18,19]. However, cachexia and poor general conditions were often associated with withdrawal from dialysis in previous studies [5,14,15]. In our study the difference in medical complications (with the exception of cachexia and poor general condition) did not reach the statistical threshold. One could suggest that the sample size was too small. Nevertheless, there was no difference in the Davies score, suggesting that there was effectively no difference between two groups concerning medical complications.
More often, patients withdrawing from dialysis were living at home; only a minority of patients were living in a rest home. Other authors showed that patients withdrawing from dialysis resided more often in medical institutions [3,15]. Patients withdrawing from dialysis were more often invalids than patients who continued dialysis until death. This was also shown previously [6,14,15]. Patients who died after termination of treatment had a very poor quality of life and were near the end of life, the family and medical team were helpless to relieve their suffering. In these cases, the dialysis sessions were discontinued, indeed discontinuation of dialysis seemed to be the most appropriate option.
In most incompetent patients, physicians initiated the termination of dialysis. This was also noted in the early 1970s in the USA, whereas in the 1980s, the family initiated the discussion more often than physicians [1,20]. The physician and/or the nursing staff initiated the discussion and made the decision more often. In contrast, in previous studies, the patient and his family or relatives more often initiated discussion and made decisions [1,2,14,20]. Moreover, when the decision was made in the dialysis unit, it was always the physician who made the decision. A systematic discussion was done among the nursing staff (nurses and aides) in only four units in our study. The discussion did not systematically include a general practitioner, or a multidisciplinary team. The final responsibility for the decision rested with the nephrologist, and it was often desirable that the family did not feel responsible for the decision, since this can lead to feelings of guilt.
This difference could be explained by the fact that in France the idea of taking responsibility for one's own body is less widely accepted than in North America, especially when the outcome may be fatal. Moreover, as demonstrated in our population, the attitude of the physician towards the patient and his family is often a paternalistic one.
In conclusion, death after withdrawing from dialysis was the most common death in dialysis patients in a French population cohort. However, patients who died after discontinuation of treatment were more often in a poor general condition, near the end of life. Therefore, arrest would not be a decision of treatment termination, but rather a non-maleficence attitude, and discontinuation of dialysis appeared to be the most appropriate option. The decision was most often a medical decision, after discussion with the patient, if he was conscious, and with the family. In a few cases, the question of stopping treatment was systematically discussed by the nursing and medical staff.
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Acknowledgments |
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Conflict of interest statement. None declared.
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References |
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