Intractable Diseases and Homecare (Nanbyoh to Zaitaku Kea), Vol. 13, No. 8, November 2007, pp. 62-65
Urinary Management in Patients with Amyotrophic Lateral Sclerosis: Experience of Using a New Urinary Management System for Male Incontinence
Michio NONAKA1, Rika YAMAUCHI1, Nami SASAKI2
1Sapporo Medical University, Department of Neurology 2Sapporo Medical University, Department of Medical Health Maintenance
Amyotrophic lateral sclerosis (ALS) is a progressive neurological disease that selectively destroys motor neurons. One of the distinctive characteristics of the disease is that it does not affect urinary function, but in daily life many patients do experience problems with toileting. In this article, we report some cases of ALS patients who have problems with urinary care, and our experience of using a new system, Afex ®, for urinary management in male ALS patients.
Case 1: A patient who insisted on using the toilet until the very end
A 49 year-old female patient with ALS initially lost motor function in the left arm. In the beginning, she had her bathroom renovated so that she could use the toilet with her wheelchair. However, with progressive loss of motor function, going to the toilet became difficult, and although she disliked it, she began using a portable toilet at the bedside. She strongly desired to continue using the bathroom in the normal manner.
Her condition progressed, and she began to have difficulty in breathing and started using non-invasive inspiratory ventilation (NIV) with a mask. However, she experienced intense breathing difficulty with the effort of moving to the bedside portable toilet to urinate. Since her condition did not improve, emergency visits to the hospital increased in frequency. She refused to use a handheld urine receptacle, diapers or a balloon catheter, and continued to use the portable toilet. In the end, her condition worsened, and she was taken by ambulance to the hospital and admitted. Her condition continued to deteriorate and she died.
Case 2: Nighttime urinary management was a problem for the caregiver
A 65 year-old female patient and her husband ran a small restaurant adjacent to their home. The patient’s husband took care of her while running the restaurant. Initially the patient used a portable toilet, but with the progression of her disease, movement became increasingly difficult. In particular, assisting her with urination during the night was a real burden for the husband, and caring for her at home in general became a problem. She categorically refused to use a handheld urine receptacle or diapers, therefore the home visiting nurse consulted us. After we convinced her that it was necessary to find some alternatives in order to continue home care, she finally agreed to have an indwelling balloon catheter.
Case 3: Patient chose diapers instead of an indwelling balloon catheter
A 66 year-old female patient who was living alone entered a long-term care facility type hospital. In particular she had significant weakening of neck muscles, and had difficulty holding her head. Movements involved in going to the toilet were both painful and dangerous, and alternatives had to be considered. She also had bedsores, although not severe, and the evaluation of the nurse was that an indwelling balloon catheter would be the best alternative. The patient, however, refused the balloon catheter but was willing to compromise and use diapers. This was continued with occasional use of an indwelling catheter only in the event of diaper rash or worsening of her bedsores.
Urinary Care is a Very Important Problem for ALS Patients
In the case of ALS, disabilities related to awareness, eye movement, the bladder and rectum, and bedsores in principle do not appear until the patient is terminal. In addition, almost none of the patients suffer from intellectual disabilities. Therefore, when we explain the various options of urinary management to the patients, we explain that despite their disease, the patients are capable of deciding for themselves what options to choose.
Although urinary function per se is not adversely affected by the disease, the decrease in motor function in the limbs and trunk means that the movements necessary for maintaining normal urinary habits become difficult. Many ALS patients develop trouble breathing. Even when the movement necessary for normal urination causes painful breathing difficulties, many patients still prefer to maintain normal urination habits. However, as a result of breathing difficulties and muscle weakening, maintaining the necessary posture becomes difficult, and the burden on the caregiver or nurse increases. We have seen many cases in which it was impossible for the patient to maintain the desired urination habits.
According to a survey conducted by Fujita et al.i on the actual situation of ALS patients and the level of burden on the caregiver, the top 3 burdens identified by caregivers were suction of mucous and saliva (44%), fecal excretion (36%), and urination (33%). In particular, heavy burden associated with multiple episodes of nighttime urination was mentioned.
With the progression of ALS, a number of bodily functions become disabled, and replacement or assistance becomes necessary. Wheelchair, artificial breathing equipment, gastrostomy and so on; patients are inevitably forced to accept their disabilities and make decision after decision on how they will be treated. With respect to the problem of managing urine excretion, though, this is generally perceived as not a matter of life or death. It is our impression that medical professionals, especially doctors, tend to attach insufficient importance to this aspect. But, urination is a very private matter, and in providing care or assistance, it is important that we allow the patient to retain his dignity. This sensitivity is especially important in the case of ALS, because the higher-level intellectual function is not impaired and the patient’s personality is preserved.
For these reasons, management of urinary care is a very important problem for ALS patients, and the reality is that currently there are not many alternatives. When an ALS patient develops difficulty with the movements necessary for normal urination, he/she has the following options: diapers, handheld urine receptacles, condom catheters, automatic urine collection devices, indwelling balloon catheters, and cystostomy. Unfortunately, the patient is not necessarily satisfied with any of these alternatives, and we who have experienced these difficulties in the clinical setting think that further investigation is necessary.
A New Urine Management System for Males
A new system developed for managing urine excretion in males (brand name: Afex ®) has recently become available in Japan (See Figure 1). It was originally developed to manage incontinence associated with, for example, complications of prostate cancer surgery, but we thought it might be also useful for ALS patients, and requested several patients to try using it. The system comprises several components which can be combined in different ways to match the needs of ambulant users, wheelchair users, bedridden users, and users of handheld urine receptacle. This means that the system can address the different stages of progression of ALS, and can be used in various situations of daily life (See Figure 2). The key component of the system is the “receptacle”, consisting of an outer layer of high-density polyethylene and an inner layer of soft PVC which is perforated with holes through which the urine can flow. It is designed to prevent backflow to some degree (See Figure 1). The system is latex-free. The receptacle has a diameter of 45 mm and does not put pressure on the penis. There is much less skin trouble than with a condom catheter and it is much more comfortable to wear.
Use by a Patient in a Wheelchair
The patient used a wheelchair because of muscle weakening in the lower limbs. He continued to work but had difficulties moving to the toilet and standing up at a urinal. With muscle weakening also in his upper limbs, it became increasingly difficult for him to urinate by himself at work. The care manager suggested that he asked a co-worker to assist him in using a handheld urine receptacle, but he asked if there were other alternatives.
For this patient, all other alternatives (diapers, condom catheter, automatic urine collection device, indwelling balloon catheter, vesical fistula) had various problems. Since he had very understanding co-workers, we also thought that the suggestion of the care manager was reasonable.
If that option did not work, then in actual reality, continuing to work would become difficult. However, when we put ourselves in the shoes of the patient and his family, we wanted to do something to help him, and suggested another alternative of trying this new system for male urinary management.
He tried the system designed for wheelchair users (See Figure 3), which has a leg bag. The patient reported that the feeling of urination was natural and there were no problem with leaks, uncomfortable pressure, or skin trouble. Thanks to this system, the patient is able to continue to work. Sometimes the leg bag becomes full while at work, but compared to asking someone for help with a handheld urine receptacle, it is relatively easy to ask a co-worker to help emptying the leg bag. The patient is willing to seek help, and his co-workers are cooperative.
Sometimes while at work, the patient was bothered by an ammoniac smell, but was able to solve this problem by placing a ceramic, non-woven sheet with deodorant capability over the receptacle. Use of this system incurs an additional annual cost of about 87,600 yen to the patient, but he is very satisfied and intends to continue using the system.
Use by a Bedridden Patient
The patient began with progressive bulbar paralysis. His entire larynx was removed, and is using an artificial ventilation machine. He has communication assistance devices, but he can only move his eyes or blink in daily communication, and has a small amount of movement left in his right thumb. His urinary function is normal. In the beginning, he used a handheld urine receptacle assisted by a caregiver. With the progression of muscle weakness, communicating his need to urinate became difficult. The caregiver did not recognize his need in time and there were accidents. Therefore he regretfully began to use diapers also.
This patient started to use the Afex ® system with the leg strap option to hold the receptacle in place, but he thought the leg strap felt a little unnatural. Since he spent almost all of his time lying supine and did not move, we removed the leg strap, wrapped the receptacle in cloth to prevent abrasion, slippage and any awkward feeling in the thigh area, and weighted the tube down to hold it in place. This modification was successful (Figure 4). Sometimes the patient urinates up to 300 ml at a time, but the system has not leaked and he is using it successfully. He reports that the feeling of urination is natural, and is very satisfied. This patient has also used this configuration successfully when going out of the house and no longer needs to worry how to handle urination when away from home.
This patient formerly spent about 200,000 yen annually on diapers. The cost was considerably higher than normal, because whenever the patient urinated, he would request his diaper to be changed right away. According to the manufacturer’s suggested replacement schedule for individual components of this new system, the cost is expected to be 68,000 yen, which is a significant savings from the former diaper cost.
The new system for managing male urinary continence is very useful for ALS patients at all stages of the disease, and in the myriad situations of their daily lives. In the present study, we tested the systems adapted for wheelchair and bedridden users, and both resolved the problems the patients had faced prior to using the system, and increased the patients’ QOL. There were no adverse events that may prevent the patients from continuing to use the systems, and the patients are using them comfortably. For the patient who had used diapers, cost saving was also achieved. On the other hand, patients may need to make adjustments to their trousers or underwear in order to connect to the leg bag. Therefore, when modifications of the patient’s bathroom and/or use of a portable toilet will solve the patients’ problem, we imagine that many patients may choose those alternatives rather than actively choosing the Afex ® system. Nevertheless, this system increases the options from which patients can choose, which in itself is very valuable.
Unfortunately, no Afex ® system designed for females is available. We hope that such system will be developed soon.
i Fujita, Maki, et al. ALS homecare patients in Ibaragi Prefecture: Survey of actual conditions and perceived burdens on the caregiver. Ibaragi Prefectural Hospital Medical Magazine (Ibaragi Kenritsu Byouin Igaku Zasshi), 2005; 23(2): 57-66.