Yoshitaro HOTTA (JSPS Research Fellow) Workshop on The Mechanization of Empathy in Health Care January 24, 2009 Ritsumeikan University

 Amyotrophic lateral screlosis (ALS) is an incurable neuron disease that causes severe disabilities on the patients.  In order to realize comfortable life of the people with severe physical disabilities, such medical equipments as mechanical ventilators and communication aids are indispensable.  An advanced stage ALS patients need a mechanical tracheostomy ventilators for their lives. However, most ALS patients (70% in Japan) die without using the ventilator.

 Certainly, ALS is incurable, and the loss of physical functioning is irreversible. Until now there has been a common understanding that ALS patients' QOL decreases as the disease progresses.  But we know that patients’ QOL largely depends on the circumstances of life, and especially on the degree of freedom to communicate with others.  Medical equipments such as mechanical ventilators can save the life of patients.  However, whether the patients use ventilators or not depends on the patients’ will to live.

 QOL of ALS patients of advanced stages  What is necessary for ALS patients to live?  The possibility of using medical equipments in home care setting  Conditions for effective use of assistive technologies that realizes high QOL of ALS patients.

 Most patients with tracheostomy ventilators need communication aids in order to maintain high QOL, because they lose their voice after connected ventilators.  Patients in advanced stages need to be attended by care-providers 24 hours a day who check connection tube of the ventilator every 20 – 40 min.  Consequentry, even though patients can survive as long as several monthes to several years if patients use ventilators, many people consider decisions to use ventilators to be “exeptional cases.”

 We think that the patients do not need to die if there are sufficient support for them to live a comfortable life at home and to communicate with others.  In fact, recent studies have shown that : “ patients’ QOL, as perceived by the patients themselves, does not necessarily decrease when patients loses more physical functioning; therefore, it is unlikely that those scales that focus on the general health status of the patient does not accurately measure patients’ QOL.” *  * “Quality of Life and Psychosocial Issues in Ventilated Patients with Amyotrophic Lateral Sclerosis and their Caregivers” Dagmar Kaub-Wittemer, Nicole von Steinbuchel, Maria Wasner, Gerhard Laier-Groeneveld and Gian Domenico Borasio J Pain Symptom Manage; 26-4: (October 2003) 891

 In Japan, there are vantilater-connected ALS patients in advanced stages who live alone at home using the formal care taker 24 hours a day and enjoy communication with others.  The QOL of these patients depend on the most part on the circumstances of the life of them.

 The humanistic use of mechanical life-sustaining devices.  Patients need to have control over the circumstances of their daily life and support systems.  Being able to communicate with others especially with other patients. For that purpose, assistive communication aids are indispensable.

 The assistive technology can help them. But they face three difficulties on access and to master it.  It is better to start training and to adjust their bodies to the device before the disease advances.  There are three types of difficulties. ① difficulties for the patients. ② difficulties for supporters ③ the institutional constraints.

 The burden of learning how to use the communication device.  It is better to start training and to adjust their bodies to the device before the disease reaches advanced stages.  But it is too burdensome.

 Even if the patients know that their disease is progressing, they want to rely on their remaining ability to communicate.  Even if the patients need to practice to communicate with simpler devices with only one switch, they still want to type with keyboard. (To some patients, being able to type has a special value; it doesn’t matter how slow their keystrokes are.)

 The other dimension of the difficulties for patients is mental one.  Patients do not want to think about the progress of their disease.  Learning how to use the device that works with a light stroke or eye movement forces patients to imagine their future serious situation.

 ② The supporters often cannot understand the real needs of the patients because they are not the patients.  ③ Institutional constrains. The institution responds to a call for support only when the patients already have needs.  Patients can not be given the institutional support before the needs are actualized.

 Empowerment by the peer person.  Manageability of mechanized life for the patients.  Institutional and human support that anticipates the progress of the disease.

 I wish that... if you are told that you have an ALS and you have a life of 3 to 5 years, you won’t give up your life. I hope you extend your life with life- sustaining treatments.  Even if you are on the ventilator, there will be a lot more joyful days than painful ones.  So please survive difficult circumstances, and believe that you can smile someday as long as you are alive. （ ）

 In home care setting, patients need the combination of two kinds of technologies.  High technologies like a computer and a mechanical ventilator are indispensable for patients to live.  Those high-tech mechanics are crucial importance for life of the patient.  However, those devices that touch patient’s body rarely fit a patient’s body shape.

 The shape of the interface between patient’s body and a communication aid differs widely depending on the individual patients.  In order to meet the particular needs of individual patients who have different physical conditions and severity of diseases, subtle adjustments is indispensable. (e.g., the interface between communication aids and the patients’ bodies)

 Devices that are simpler, or of more primitive structure, are more welcome also because it is easier to fix and adjust for home care workers and family members (e.g., non-professional persons).

 QOL of patient with severe disabilities such as ALS depend on the circumstances of life especially on the possibilities of communication with others. For that purposes, it is important for patients to feel abilities of control of their own life.  It would be better to prepare simple interface devices for daily use as home appliances.  Patients need an effective mixes of the medical equipments and the low-tech interfaces.  One way to liberalize the institutional constrains would be to clarify these potential needs of patients.

Thank you for your kind attention.