_______ translation by Midori Hiraga________

Preset answers?

I think it is natural to put a ventilator on when it becomes necessary. This is why.

If breathing becomes difficult, then make it easier. When it becomes difficult, I will say, "I'll put it on" if I can say so. Even if I couldn't say so, I will just do so if I can. If the family or caregivers see the patient is suffering with breathing difficulty, then they will put a ventilator on. If they can communicate with the patient, then they will suggest, "Let's put it on" to the patient.

I believe basically people put on a ventilator because breathing becomes difficult. The reasons for difficult breathing can be "because I was drown" or "because I got a rice cake stuck in my throat", or, because the patient's condition become severe. It's just the difference of the situation.

However, things are more complicated because sometimes things don't work so simple in reality. In fact, a large number of people choose not to use a ventilator even when they have breathing difficulty. People discuss that it is up to the patient's determination or this or that. Let's look at the problem here.

You can read a short summary below. I've written some longer and more detailed versions of this discussion in books if you want to know more (I put the footnotes for that purpose*01). Some of the readers might want to criticize what I wrote here. I welcome criticisms. However, I omitted many issues here to make it short, so I'd like you to read my longer and full versions of this discussion before you criticize me.

Is it something special?

To begin with, some people think it is such a big issue to put a ventilator on. Some other people say a ventilator is not something special. I would choose to use a ventilator rather than suffering with lack of air. Of course, it's better if it's a simple matter. How is the reality?

Those who think putting a ventilator on is not a big issue, say that a ventilator is just another tool or accessory, like spectacles or pierced earrings. Some people agree, with this view, but some others may get annoyed or angry. Well, both parties have their say. How special a machine a ventilator is?

You may recall your school lessons: breathing is the process of inhaling air to send oxygen to your blood and exhaling air back to the atmosphere to extract CO2 from your blood. Sure, it is an important, complicated process. A patient with breathing problem has his or her breathing mussels weakened, so it becomes difficult to inhale and exhale air. A ventilator substitutes that air movement. The rest of the work is still done by lung. Some people say a ventilator is like a fan*02. Actually, the term "ventilator" has such meaning (I understand that the term "Respirator" has a different meaning, but I don't know enough to discuss about it here). If you think that way, we have been using lots of tools or machines. For example, people put on spectacles, just as tools, to supplement their eye lenses.

In addition to that, we have been using much more complicated machines. A dialysis machine is such an example. This machine substitutes the work kidneys do - filtering blood. You can say the machine does very sophisticated job! Today, many people use dialysis machines and few people complain it's a wrong choice.

So, it doesn't matter if a tool does complicated job or simple job, important job or much easier job. Just use it! Among such machines, a ventilator does important job, but what it does is quite simple.

We are cooperative animals. Nobody lives all by him or her self, or nobody makes all the necessary goods by him or her self. The ideas of living "thanks to everybody around me" and "not only by my effort" are considered good in our society. People think it's a good thing to appreciate all the help you receive to live. Using a ventilator to live is just a part of it*03.

Actually, the patients who use ventilators are not passive, but do their effort of breathing. They try to adjust their airflow to fit the movement of the ventilator. Sometimes it's not easy, or it's painful. On the other hand, those who can breath without a help of a ventilator don't pay any attention on their breathing. No need to be ashamed that using ventilators is relying on the machines completely while patients do nothing by themselves. Most people become more conscious on breathing and pay more effort in breathing action when they use ventilators.

It's NOT the "terminal phase"

When I say "It's natural to make it easier to breath when it gets difficult", some people argue back saying it might be true when you accidentally stuck rice cake or something, but it is a different matter because "it is the terminal phase". Well. But this "terminal phase" also is a term used carelessly and its meaning has become unclear. "The terminal phase" should mean that the end (= death) is coming soon. No complicated matter. But this word is used in two ways.

One situation is when the end IS coming no matter what you do. Some patients fall into such situation physically. It is difficult to judge the patient is really in such situation. But if he or she really is facing the end, then, it may not be a good thing to cut his or her body and put a machine on.

On the other hand, there is another completely different situation that "if we don't help" the patient shall die. For example, if we don't supplement breathing, the patient's breath becomes too weak to sustain his or her life, then, the patient dies. Most of the patients who have to decide what to do with ventilators are in this situation. Still, people call it "late phase" or "terminal phase."

It is wrong. There are many cases that people die if we don't do what's needed to help their lives. When people are shedding blood in accidents, having stroke or pneumonia, they would die if they didn't receive any treatment. Even some cancer can be treated and the patients can live decades after that. It is wrong to call all these situations "terminal phase" and stop doing what can help them. So, ALS and some other sickness are same. If you insist on calling "Self-determination in the terminal phase treatment", then you are wrong and you need to be corrected. Just do what you can do to help the patients' lives and their livings.

What kind of machine a ventilator is?

Compared with tools like spectacles, a ventilator is big and has exaggerated shape. A patient wrote that she was shocked to find herself with a ventilator after fainting with breathing difficulty. Not many people see ventilators in their daily lives, so they are socked when they see one. "Holding something to the throat" frighten people, but a ventilator is connected in such a place. It sounds more serious than putting something on a hand or a leg, or wearing spectacles.

Fortunately, people can get used to it. I haven't use a ventilator so I don't know how I would feel or how I could get used to it. But most people who use ventilators say they get used to it soon. The patients soon become familiar with the sight of ventilators. Some even see it as reliable machine. Then, they get used to breathing with a ventilator. The family and caregivers also get used to the sight of the patient wearing a ventilator. I saw patients with ventilators only for sometimes, but I'm already get used to the sight. Getting used to things is not always good, but in this case, I suppose it is a positive effect.

Putting on a ventilator can limit some actions or talking capability. It surely is a big issue to consider. Still, such limitation can be caused by other problems as well. For example, some patients, without a ventilator, loose capability of talking because of their vocal muscle failure. On the other hand, some patients who can talk with their muscle CAN continue talking even after putting on a ventilator. I hope some specialists will write about it than I try to discuss the matter in vein. Anyway, a ventilator is a simple machine. So I hope it will develop to be more easy to use and easy to move with it.

More important issue about putting on a ventilator is to arrange a desirable environment for the patient. Many people talk negative of ventilators saying that it would be horrible to stay alone in same place in same position all the time. You cannot tell the patients to get used to it. We should change the environment to solve this problem, not the patient.

If care environment remains miserable, it may be cruel to tell the patient to "survive" no matter what. But think about it. Most of the cases, patients decide to "not to put on a ventilator (= I will die without it)" when they are in hospitals. In fact, the patients are complaining "this hospital and the care environment you put me in is horrible, so that I'd rather die". Then, the hospital should say, "OK, as you wish"? No way! If the care environment is too miserable, then hospitals can improve it, to make the life of patients more full, interesting, and less painful. People should do what they need to do before agreeing the patient's decision to die.

Your way of living changes as your body condition changes. There might be more limitation. Being capable to do anything is a good feeling. But, even if you cannot move things by yourself, the world around you still exist, so that you can feel it and accept changes in that world. If the world stays same all the time, it might bore you. But if you modify it or improve it, then you should be able to enjoy it without moving your body.

Some people may be able to enjoy it better than the others. It depends what you compare it with. It should be better to have some good things with reduced pain, than abandoning the world and disappearing from it completely. I think it's better to start discussion from this simple point.

Is it something to choose and decide?

Today, the patient himself or herself is to decide either to put on a ventilator or not. Doctors and families used to decide it in old days, but more and more people think it's better for the patients themselves to decide. Doctors and families should remain neutral, so they say. That's the "matter of course" these days.

However, I think it's wrong to ask, "Do you want to put on a ventilator or not?"

The main reason I hesitate to ask such question is because we are actually asking the patients life-or-death decision. Asking what to do with a ventilator actually is asking the patients to decide either they want to live to die. Normally, we don't ask such question unless we want to offend somebody. Normally, when somebody say, "I want to die," or "I'm wondering if I should live or die", then, we don't tell them "OK, go ahead," but tell them not to die. First, we would ask "Why?" We wouldn't ask "Which?"

If you fulfill somebody's wish to die, then you are assisting suicide. If you think assisting suicide is wrong, then letting the patient die is also wrong. The law accuse of a crime for assisting suicide. Of course, some people believe, no matter what the law say, there is a time that assisting suicide is good and right thing to do. Anyway, we should remember that accepting the patient's decision not to use a ventilator, or decision to take it off, is helping the patient to die. It is same as agreeing suicide and assisting suicide.

My opinion? I wouldn't say that all suicide is wrong. So I wouldn't say nobody should agree with the patient's decision to die. But most of the time, I would say it's better to live. I would at least tell that to anybody who says he or she wants to die.

Putting on and taking off.

Deciding not to put on a ventilator, and taking off the ventilator in use is different. If the patient decides not to use a ventilator, that means, "not starting the treatment." Thus, it is not considered as an active action - it's not killing the patient nor assisting suicide. However, once a ventilator is put on a patient, taking it off later is considered as an active action - the action of killing the patient or assisting suicide. Not putting on a ventilator is OK, but taking it off is not allowed. So, some people say, it's better not to put it on to begin with. There might be a chance that you want to take it off later, but it is not allowed to do so, then it's better not to put it on to begin with, some people say. Therefore, more patients decide not to put ventilators on, and die in short. It's better to allow the choice of taking a ventilator off later, so that more patients can decide to put it on.

Not putting it on and taking it off are a bit different, but not completely different.

Some situations are different - when you take off a ventilator in use, the patient shall die almost immediately in many cases. On the other hand, deciding not to put on a ventilator, the death may not come so soon. Everybody knows death WILL come one day - but we don't know when. That's why we can remain calm. It's fearful to expect death certainly, so its difference - knowing the death immediately or sometime in future - can be huge.

There is some difference - but we should understand not putting a ventilator on and taking it off is basically the same thing. It is wrong to say that one is assisting suicide and the other is not. To get straight to the point - both are assisting suicide. Think about it - it's same not to turn on the switch knowing that will let the patient die, and turning the switch off knowing that will let the patient die, isn't it?

So, neither is OK, or both are OK. Some academics say a passive action nor an active action brings the same result, so we should allow them all - including poisoning the patients. On the other hand, if it is a problem to take off a ventilator, then not putting it on should be considered as a problem, too. I think we should think so basically.*04

If, what if, you want to take your ventilator off after you put it on, what exactly can you do? I cannot think the final answer, but I'll tell you a few ideas.

One way is to tell the patient not to say such a thing. The patient might say every day that he or she wants to die, and the family or caregivers have to listen to that plea every day. But it should not be more difficult to tell the patient not to die, than telling a healthy person who wants commit suicide not to die.

Another way is to try removing the cause of pain. The patients wish to die because of pain. Death can be the final cure for any pain. However, we normally think of other cure first, not death only, to end pain. So there should be something you can do to improve the situation so that the patients stop wishing death.

There is also a case that the patient determines to die and somebody has to help it. Then, the helper has to face the charge of assisting suicide. Some people argue that the helper did it by his or her good will, so the charge should be decreased. But assisting suicide is mostly done by good will in other cases, too. Should we consider that taking a ventilator off is something special? I don't think so.

You have to decide before you experience it

Let's bring back our focus on "self-determination". Is it always good to ask the person in question what he or she wants to do, and do as requested? Some people say it's treating the patientlike a child, or behaving "paternalism" if other people consider and make decision for the patient. It sounds so. But we should discuss this point more in detail.

Normally, it's best to ask what he or she wants to do, because the person knows best about what's good for him or her self. The person knows what tastes best to him or her, so we normally ask that person, or let him or her decide. Well, that's OK.

The problem with ventilator is the person has to decide about it BEFORE he or she actually experiences it. The patient is asked to decide beforehand - it's called "advance directive" - because the patient might loose the capability to communicate his or her will, or might be upset when the condition become severe. Some people say "advance directive" is a good idea. But I can't see its advantage.

First, nobody can really understand how it is to live with a ventilator until he or she actually live with it. The patient is asked to decide what he or she doesn't really understand. It must be troublesome to decide such thing in advance. The advantage of self-determination is that the person in question must know what's good for him or her. But in case of deciding on ventilator, the patient doesn't know about it, either. So, self-determination may not be the best answer.

When the patients consider about ventilators, they imagine how it would be (because they haven't put it on yet), or see or hear about other patients surviving with ventilator. At that time, they reckon patients with ventilator are same as dead. I believe it's rude for people who live with a ventilator.

Second, a person's feeling can change, even after making a decision. Some people say it's OK as long as the patients can change their determination later. Then, I wonder, what's the use of "advance directive"?

Third, in most of cases, the patients cannot tell their will at the last minute - they cannot decide what to do when their breathing ceased. So they should raise their voice just before that? It must be difficult to consider a serious problem and tell so in such a situation.

Finally, most people get depressed when they have to consider such matter of life and death. Can they make the best decision in such depressed condition? Shall we tell them "you decide - it's up to you" when they are so desperate?

Following others instead of resisting them

The second reason why "self-determination" is better is that when other people intervene, they decide on their behalf most of the time, not on the patient's benefit. For example, some facility workers want to go home early, so they tell the patients "you should go to sleep early for your health". In such situation, the patients cannot live as they like. In order to prevent interventions on behalf of other people, it's better to ask the patient's opinion and better to respect it. The self-determination is effective to protect the patients against the trend in society.

The situation is slightly different in case of ventilators. If the social trend tends to let patients survive, deciding to die is resisting such trend. In fact, some people believe that modern treatment tend to overdo, without consulting the patients. Some other people believe families tend to wish life extension no matter what the patient wants.

There are some cases like that, too. However, some facts show the opposite situation. In old days when hospitals could make more profit by keeping patients in hospitals and over treat them, medical professionals tend to provide more and more treatment. However, more treatments don't necessarily make more profit and hospitals struggle with tighter budget these days. So such "useless" treatments are avoided now. On the contrary, more treatments make less profits, so medical professionals sometimes hesitate to provide necessary treatment, too. As for families, accepting the total care of the patient is a huge burden for them. The family might request extending life by cardiopulmonary resuscitation so that they can meet the moment of the patient's death. But long-continuing care is different - it is highly possible that the family become reluctant to extend life of the patient.

The main stream is to end early than continue struggling. Therefore, providing "freedom to die" for the patients makes them to consider the burden of their family and caregivers and realize their expectation, rather than making them to resist the social trend to protect themselves.*05

When we consider this, we cannot just say, "OK - you decide".

Why not consider what's necessary is necessary?

In the end, the factor we need to consider is how the patients should live with ventilators, and can they really live on with ventilators. This factor is the biggest reason patients hesitate to put ventilators on. To live on with a ventilator, the patients need somebody to take care of them. The ventilator can help their breathing, but some matters require other people's care. Some lucky patients can move other parts of body except the breathing muscles, but many patients cannot move other parts of body, either.

In reality, the family spends most of the time to take care of the patient, both before and after putting on a ventilator.

So the patients have to think about their family. People can decide to take care of other people, but the patients have to ask somebody else to do so. When the patients think about it, they'd rather withdraw. Those who have worked for others till then, tend to consider not to ask other's help.

I respect such feeling. But, still, I'd suggest re-consider that. When you have worked till today and it was good and meaningful. It was good and meaningful because you have worked to live, and worked for good things. I mean, living is good thing, so working for living is good, too. So thinking to stop living because you cannot work anymore, is like putting the cart before the horse. You don't have to hesitate to live with the help from others.

It doesn't have to increase the burden on family

When you need care, just get what you need. Even if you think so, you cannot survive without actually getting the care. Then, seeing it is impossible in reality, you think you cannot continue living. Even if you don't think so, you have to stop living.

Many people say living with ventilator increase the burden greatly. But if you think about it a bit, you soon will find out it is not so. As I said before, a ventilator is not a complicated machine - it is a simpler machine than microwave or refrigerator. A ventilator is not cheap because its market is small - still it can be cheaper. Patients with ventilator do not require any special expensive food or drink. Other necessarily items are daily stuff. A ventilator just requires a bit more hands - it requires some more care by more people. I cannot explain full here, but we do and will have ample supply of human resources.

So, it should not be a problem - but many people face the problem. Why? It's because those who can do the job don't, and those minority people, most of the time the patient's family, are forced to take all burden.

I respect the family taking care of its family member. However, family is not the only people who should be responsible to take care of the patient. It is wrong to demand more obligations only on the patient's family. I might be criticized for helping irresponsible family, but that's what I think. The patient's family has their obligation, of course. It's just the family's obligation should be as same amount as non-family people have.

Even if I admit the family has a bigger obligation on its members, its same as what parents have for children, or wife or husband has for his or her partner. The increased burden because of heavy disability should not be put on the family only.

Of course, I wouldn't stop family respect and work for their members. The point is, the family can love and take care of the member happily only when they are free of struggle. It also does not contradict the society respects family. In order to maintain family helping each other, the society has to reduce the extra burden on the family.

Accepting strangers actively

In reality, heavy burden keep pressing the patients' families. Partly it's because the society has not respected the family (leaving the whole burden on them), but partly, another reason. The long-time partners know the patient's habit of like and dislike. Then, of course, the family can detect what the patient wants or doesn't want. A new comer doesn't know well and not used to, so cannot understand the patient so deeply. A subtle difference of body position can cause pain to the patient. It annoys the patient and he or she fires a new comer. Then, in the end, only the family members have to share the huge burden of care.

Sometimes, a wife believes she is the only person who can help her husband, or vice versa. It can be true, and it can create miracle. If such dedication helps the patient, that's fine. The problem solved.

Unfortunately, the patient needs long time care - years and decades. If only a limited number of people take care of the patient, then, the pain accumulate. The patient will sense the pain of his or her family. If it continues, both get down, and both end up in bad way.

Therefore, it is better to actively and consciously accept more strangers to share the burden. If the patient respects his or her family, then it is more important to receive strangers to join the care. It's same when the family respects the patient, too.

The conclusion is, the society and people around the patient, should intervene even when the family still can support the patient. The patient and the family, in return, should accept such intervention from the strangers.

Use the system to improve the situation better than today

So. There should be no need to hesitate. Nobody can take the responsibility all by oneself, and nobody has to. What we can do, and should do, is to share that responsibility to everybody and decrease the burden for each one. All of us pay our tax and insurance fee, and those who need some care hire professional caregivers with the salary paid by the public fund. It would be too huge burden if only one person has to take it all, but it should not be that heavy if many people share its burden.

Fortunately, the public opinion began to talk about "socializing nursing care", and many reckon that the society as a whole should take responsibility of caring work instead of pushing it all on family only. Well said. But is it working that way in reality?

Japan has been notorious with her lack of social welfare. That comment has been true for many points. Luckily, the nursing care for sever disabled people has been developed some. There are some social benefits for most people to improve their situation.

"Public Nursing Insurance" alone cannot do much work and your self-pay will be big, too. Maybe you are told to use the Nursing Insurance first, but you don't have to do so always. There are some system regulated by "The Act to Support Independence of People with Disability", and it requires no pre-set condition. There also is a system for visiting nurses. If you are lucky, you can combine several systems and achieve the maximum of 24 hours per day public welfare services.

So, there is some hope. If it doesn't work today, we can make it work in future. I know an ALS patient in Kyoto City, where I live now, who lives alone at home with the care provided by public sectors. There was not enough public service before he faced the problem. He needed public services to survive, so he made appeals to the City and other public institutions, and extended the time of care service longer than before. He manages his independent life with the improved public service.

This ALS patient in Kyoto luckily had some supporters who can negotiate with officers. Not many people may be as lucky as he was. Normally, people visit a town office once, and accept what the officers tell them. One of the problems is that sometimes officers themselves don't have enough information, or have wrong information. The officers wouldn't admit their lack of knowledge, or they themselves might not notice the mistake. Sometime, or many times, people in need cannot receive the service available in this way.*06

There are still some hopes. There are some organizations that can help the patients or disabled people in need today. Their importance of existence is huge today.

<Footnotes>
*01 You can read my book "ALS: Immovable Body and Breathing Machine" for more detail about ALS. It's not a book I wrote - rather, I introduced the writings of ALS patients about how they were diagnosed, what people said about them, how they thought, felt, worried, what happened, what system and tools they used to survive, etc. I also discussed on the issue of putting on or not, taking of or not ventilators.

There also are books on "euthanasia" and "dignified death", "Good Death (?)" (2008), "Sole Life" (2009). Some previous books "Freedom to be Weak" (2000) and "On Hope " (2006) also have some related articles.

*02 Page 235-238 of "ALS: Immovable Body and Breathing Machine".

*03 About living with artificial help is written at the Chapter 2. Natural Death, and Life as Reception of Nature in "Good Death (?)".

*04 More about this discussion, see the Chapter 1. Considering and not considering the specialty of human life in "Sole Life".

*05 Normaly, self-determination will make things good for oneself, but not the others. But it will be different when deciding about his or her own life or death. More in Chapter 2: Convenient Death and Death by Humiliation: on Euthanasia "Freedom to be Weak". More on self-sacrifice is in Chapter 3. Sacrifice and shortage "Good Death (?)". What's happening now is not overdoing, read Chapter 3. Regarding holding back because it is limited - what happened in that era of "Sole Life".
*06 To find out more about above points, read articles written by Miki Nishida, Yui Hasegawa, Shinsuke Yamamoto, Yoshitaro Hotta in the first volume of magazine "Ars Vivendi".


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