Transcript Between medical equipments and home appliances

Yoshitaro HOTTA (JSPS Research Fellow)
Workshop on The Mechanization of Empathy in Health Care
January 24, 2009 Ritsumeikan University
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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.
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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.
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QOL of ALS patients of advanced stages
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What is necessary for ALS patients to live?
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The possibility of using medical equipments in
home care setting
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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.”
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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: 890-896 (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.
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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.
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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.
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Even if the patients know that their disease is
progressing, they want to rely on their
remaining ability to communicate.
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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.)
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The other dimension of the difficulties for
patients is mental one.
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Patients do not want to think about the
progress of their disease.
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Learning how to use the device that works
with a light stroke or eye movement forces
patients to imagine their future serious
situation.
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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.
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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 lifesustaining 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.
（http://www.jtw.zaq.ne.jp/cfbng303/kokuchi/kokuchi.html）
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.
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 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)
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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).
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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.