Is autonomy in dialysis still justified ?
Paris Region Association for the Use of Renal Replacement Therapy (AURA Paris)
Pr. Thierry Petitclerc, Dr. Malik Touam, Dr. Paul Raymond, Dr. Bertrand Utzinger
Is autonomy in dialysis still justified ?
The most recent decrees on the organization of the treatment of chronic renal failure in France have, quite justifiably, given patients the right to choose their desired treatment mode, and in particular the right to refuse the autonomy, which is, or should, be offered. However, we would like to firmly assert our belief that autonomy in dialysis, whether hemodialysis or peritoneal dialysis, should still be encouraged, even though the arguments have considerably changed with time.
The second half of the 20th century saw the emergence of the possibility of treating terminal stage renal failure with chronic dialysis, thus saving patients from what was until then certain death.
However, this option immediately came up against the obstacle of the considerable means and costs involved in implementing this treatment.
The more senior nephrologists among us will have bitter memories of the "tribunal" sessions during which we decided, on criteria that could not be entirely objective, who would get dialysis treatment and who would be condemned to death.
Not-for-profit associations were set up, first in the Paris region then in other regions in France, to offer this treatment as rapidly as possible to a large population.
AURA was thus created in 1968 with the aims of rapidly setting up dialysis centers for the long-term treatment of these chronic patients, and studying ways of reducing the cost of dialysis by assessing new treatment methods.
AURA was the first organization in France to develop home dialysis on a large scale by providing training programs for patients and their families, installation of treatment in homes, and the medical surveillance of patients. Since then, it has developed other autonomous dialysis modes, i.e. hemodialysis in self-care dialysis units and home peritoneal dialysis.
Many patients were saved in this way when there was a shortage of places in dialysis centers. At that time, it must be acknowledged that autonomy, often obtained at the price of making demands on their families, was not generally the choice of the patient, but rather an indispensable condition to enable them to benefit from treatment with chronic dialysis.
Thankfully, the "tribunal" no longer exists in this day and age when we can manage patients requiring chronic dialysis according to the treatment mode they choose (apart from some medical contraindications that can restrict their choice). We have to admit that autonomy does not seem to be in fashion any more; according to the data for 2006 recently published by the nephrology epidemiology and information network (réseau d’épidémiologie et information en néphrologie - REIN), less than 10% of the 24,921 patients treated with dialysis on their register were treated at home (a little over 8% with a peritoneal dialysis method and around 1% with hemodialysis).
These percentages were even lower in the Ile de France region.
Admittedly, the number of patients treated in self-care dialysis units is far higher (around 25% of dialysis patients in France and 18% in the Ile de France region), but the data for 2006 do not distinguish between self-care dialysis, which is an autonomous dialysis method (with the presence of a nurse in the unit), and assisted self-care dialysis during which a nurse performs essential procedures (connection, disconnection).
Several reasons have been suggested to explain why autonomy in dialysis is not developing:
- the more advanced age of patients and the larger number of comorbid conditions present at the time they start chronic dialysis, particularly with hemodialysis, that increasingly requires the constant presence of a nurse, even a physician.
- changes in social and family circumstances do not encourage autonomy, which is a difficult experience in the absence of family support, particularly in the case of home dialysis where the psychological impact on the entire family has to be considered.
- attitudes have changed in the rich countries where access to free health care has sometimes resulted in patients demanding the maximum in care while considering it unfair when a neighbor benefits from care that he does not have the right to.
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.
Autonomy is an essential component of individual freedom, but even so is not part of human nature.
Parents and grandparents worthy of their names know this well; they teach their children and grandchildren autonomy despite the resistance put up by the latter. They also know that "autonomy" does not mean "abandon" and the high costs of the learning process before they can reap the rewards!
Likewise, nephrologists must know how to encourage autonomy in their patients, despite the natural and easily understood resistance of the latter, because autonomy in dialysis provides better quality of life; talking to patients who have chosen self-care is sufficient to be convinced.
AURA’s project is to promote patient autonomy.
But because "autonomy" does not mean "abandon", AURA’s associative project is to accompany patients throughout all the stages of their renal failure, to inform them and help them choose the most appropriate treatment mode, to train them and make them actors in their treatment, to accompany them during periods of autonomy and periods of dependence, during preparation for a possible transplant and follow-up after transplantation, to manage possible complications during hospitalization, to help patients and their families to benefit from specialized teams (dietitians, psychologists).
Finally, self-care dialysis is far too often presented by physicians and the regulatory authorities, and experienced by patients, as treatment on the cheap enabling social security to make savings in this period of physician controlled health care expenditure.
This is obviously the best way to do away with it!
On the contrary, it should be granted the means to exist because it is an investment in the future; but this requires cooperation from all the actors involved in the treatment of chronic renal failure:
- the regulatory authorities should not content themselves with simply encouraging self-care dialysis, hemodialysis or peritoneal dialysis in their writings, but in a more effective manner by insisting on appropriate training for future nephrologists, by enhancing the status of the medical activities involved, by proposing fee schedules that will ensure financial viability;
- the manufacturers should invest in development programs for specific materials, and more particularly dialysis monitors for daily use that optimize preparation time;
- the physicians should make sure that their patients have received comprehensive and objective information on all the treatment modes available before their possible care management depending on the dialysis mode(s) used in their institution;
- finally, and possibly above all, the patients themselves, whose influence on regulatory authorities continues to increase, must be convinced of the freedom offered by autonomy and have the courage to demand it.