The importance of social support in decision making regarding terminal care:
What ALS patients in Japan can teach us.
, Abe Akira
, ○Matoba Kazuko
and Arima Hitoshi
※ Poster presentation at 11th Congress of the EAPC, 2009 May 9 VIENNA, AUSTRIA.
last update: 20160120
◆ Background / Aim
It is often regarded self-evident that patients of certain progressive and incurable diseases have very low QOL. This assumption is not innocuous. Amyotrophic Lateral Sclerosis (ALS) is a progressive disease that causes impairment of respiratory function. It is incurable by today’s medicine. If the patient does not decide to use a ventilator, death should occur within 3 to 5 years after symptoms begin. It is often understood that the QOL of ALS patients are made very low by these depressed physical and biological functions. Such understanding also leads many ALS patients to choose to refuse the use of ventilator and die when in fact they could live longer if they make a different decision.
In our opinion, however, part of what makes ALS patients’ QOL low is certain social factors: it is not entirely determined by these physical and biological factors. In many cases, family of an ALS patient suffers from excessive burden because the patient needs 24 hours of care. Or when the patient has no family members who can provide care, the patient needs to stay in a hospital for his entire life. These circumstantial factors must play a role when many ALS patients are unwilling to live longer. On the other hand, these social or circumstantial factors can possibly be removed or altered. As we shall show below, in fact, a large part of these circumstantial problems can be resolved by the effort to provide efficient system of social and technical supports.
In Japan, the number of patients who decide to live longer by the use of a ventilator has been increasing by such efforts in recent years. The change owes much to the invention of a special on-screen alphabet board and censor device that together enable ALS patients to communicate with other people. The percentile of the ALS patients who choose to use ventilator is now as large as 30%, which is very large compared to Western countries. Some ALS patients in Japan have lived more than 20 years with the use of the long term mechanical ventilation (LTMV). These patients’ lives and words in fact show that they look positively at the decisions they have made. We shall provide a counterexample to the above mentioned assumption by describing those advanced efforts in Japan and introducing the words of ALS patients.
◆ Cases in Japan
#1, Mr. Kotani’s Case
Mr. Kotani does not live with his family. He is at a most advanced stage of the disease and his body almost entirely lost the ability to move. At this moment, he does not need a ventilator, but because he had tracheostomy, he has lost his verbal communication ability.
Mr. Kotani needs to be attended by caretaker for 900 hours every month (more than 24 hours a day). He goes out for walk with a caretaker everyday. He makes his day’s plan, including how he eats, where and when to go out.
#2, Mr. Wanaka’s Case
Mr. Wanaka is president of Japan ALS association, Kinki District. He mastered how to use computer after he became disabled. Now he has his own homepage, where he writes as follows:
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.
For communication, he uses the “cheek censor” to choose letters from alphabet board on the screen. He also sends emails to those other ALS patients who developed the disease recently and gives advice to them. In January 2009, he attended an academic conference through web-chat. In February 2009 he also attended the International Symposium, "Research on Home Care of Patients with ALS in East Asia" (held in February 21, 2009 at Ritsumeikan University, Kyoto Japan). http://www.arsvi.com/a/20090221e.htm
◆ ALS patients’ QOL
The lives of these ALS patients who engage in many activities despite their severe disabilities demonstrate that their subjective QOL is largely dependent on what social support is available for them. With sufficient support, many ALS patients will not choose death. In fact, many ALS patients who have decided to use a ventilator, although most of them had had negative images about using it, later came to look at their decision positively.
1. In many societies, ALS patients are given only two choices: namely, they need to choose either to give excessive burden to their families or to stay in a hospital for the rest of their lives.
2. ALS patients can live a normal life at home if they have access to social and medical supports which make up for the loss of their physical functions, and which takes burdens away from their families.
3. Though their QOL also improves in this way, in many societies people call ALS patients who need ventilator “terminally” ill, without providing a better choice (i.e., providing the social and medical supports that we discussed above), and assume that it is time for them to die once they need a ventilator.
Is this really acceptable? If not, it is our task to create efficient social support system.
※ Bibliography information will be found in our website:
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