Though the reasons indicated above can explain the decline in autonomous dialysis, this does not however seem to be inevitable.
Firstly, we need to constantly keep in mind that morbi-mortality and quality of life are demonstrably far better in autonomous patients than in assisted patients.
While there is certainly a bias in selection if the two populations of patients are compared in their entirety, this improvement seems to persist when population samples are paired by age and comorbid conditions.
Nephrologists managing the care of these patients know perfectly well how the obligatory transition, whether temporary or definitive, from autonomous dialysis to assisted dialysis is usually a "tragedy" for patients who then put them under pressure, often going to extremes, to obtain the permission to regain their autonomy.
Moreover, the introduction of daily dialysis seems to provide grounds for developing home self-care hemodialysis. A great number of studies in the last few years have shown that a daily hemodialysis pattern, with six short sessions (2 to 2 1/2 hours) a week instead of the three standard length (4 to 5 hours) sessions, seems to be easier to work into the patient’s usual social and professional lifestyle and brings freedom concerning diet and fluid intake, comfort during dialysis sessions (near absence of symptoms, in particular symptomatic falls in blood pressure), and dialysis of a quality incomparable with the standard dialysis techniques. Moreover, in general, patients who have tried out daily hemodialysis do not want to return to the standard pattern.
However, for the same weekly duration of treatment (12 to 15 hours), a daily dialysis pattern doubles the time and cost of transport to a dialysis unit, thus becoming prohibitive, unless the hemodialysis sessions are performed at home.
Patients treated in self-care dialysis units with a daily dialysis pattern aspire more than the other patients to acquire the necessary autonomy before making their transfer to home hemodialysis.
Daily hemodialysis will thus probably be the future of home hemodialysis, as it will on the one hand gain the support of patients wanting to benefit from the comfort provided, and on the other hand, most certainly prolong the duration of patient autonomy and thus maintaining patients in home care.
If the benefits of autonomy are so considerable for patients, why is the use of self-care dialysis, both peritoneal dialysis and hemodialysis, still not very widespread? Several reasons can be advanced involving the patients, the physicians and the policies of regulatory authorities.
Some of the reasons are related to the physicians themselves not being entirely convinced of the advantages of autonomy.
For some, their lack of conviction could possibly be related to bitter memories of the time, not so long ago, when the shortage of places in hemodialysis centers forced them to exert extreme pressure on their patients to accept autonomy to be able to treat them.
For the younger physicians, who never knew the bad old days, their lack of interest is most likely related to the absence of training: who needs to be reminded that the teaching of dialysis for trainee nephrologists, already very limited in a great number of university hospitals, particularly in the Ile de France region, does not leave any room for the teaching of autonomous dialysis, probably for the simple reason that it practically never takes place in university hospitals?
Other reasons are related to the policies of regulatory authorities whose proposed fee schedules seem to indicate that the main objective of autonomous dialysis should be to provide a potential source of savings compared with assisted dialysis.
This attitude just reinforces the tendency of patients, and sometimes of physicians, to not content themselves with treatment on the cheap.
In fact, the main objective of autonomous dialysis must be to improve quality of life for patients, which justifies the cost.
The savings made, the most often very real if considered globally (e.g. in the case of daily hemodialysis, taking into account the reductions in drug use and days of hospitalization, and the time home care is maintained before transfer to a retirement home, etc) should only be a secondary objective.
We would like to give a few examples here to illustrate how the regulatory authorities do not give the impression they support autonomous dialysis:
- The freedom for patients to choose autonomy requires objective and comprehensive information for patients :
at AURA, personalized information is given to patients during a half-day at the Dialysis Training Center.
Patients first meet a physician who may eventually need to contraindicate one or another dialysis technique.
The various hemodialysis techniques are then presented by a hemodialysis nurse (in-center hemodialysis or in a dialysis unit under medical supervision, self-care or assisted dialysis, home dialysis).
Afterwards a peritoneal dialysis nurse presents the various techniques (autonomous continuous ambulatory peritoneal dialysis or assisted by a nurse, automated peritoneal dialysis).
Finally, the physician notes the choice of the patient and helps with the decision if necessary. To date, these indispensable information sessions are not reimbursed by social security.
- The choice by patients of autonomous hemodialysis in a self-care dialysis unit is often based on the nearness of the unit and the flexibility of opening hours that enable them to better reconcile professional activities and dialysis treatment.
This technique requires units near the patients and thus small in size, with extensive opening hours, and a dialysis machine for each patient (while the other hemodialysis modes use the same machine for 4 to 6 patients).
The resulting operating costs are very high (in particular rental of premises in large cities, and especially inner Paris) even though the reimbursement rate for self-care dialysis is one of the lowest; this activity is thus in deficit and will probably be abandoned by the greater majority of health care institutions.
Yet, the patients on self-care dialysis are the most often patients who work (and thus pay social security contributions) and whose hospitalization rate is among the lowest, which represents supplementary savings.
- The remuneration allotted to a private practice nephrologist for managing the care of an autonomous patient, whether treated with hemodialysis or peritoneal dialysis, is far less attractive than that allotted for other dialysis patients.
But, the medical management of an autonomous patient from a distance is more stressful for the physician than the management of a patient present in a center, and is often very time consuming.
This explains why autonomous dialysis is not very often performed in private practice and is mainly reserved for facilities run by associations where physicians receive a salary that does not depend on treatment mode.