I think it is natural that a person use a ventilator when necessary. Let me explain why I think so.
If a person has difficulty breathing, then he/she arranges it so that he/she can breathe without the difficulty. If I am in the position and am able to speak out, I probably say that I will use a ventilator. Even if I do not say so, I will just use a ventilator if possible. If someone's surroundings find out that he/she has difficulty breathing, then they will allow him/her to use a ventilator. If they can communicate with him/her, then they will suggest that he/she use a ventilator.
There are what I believe the basics concerning being on a ventilator. They include the situations of "Because I am drowned", "Because a piece of rice cake got stuck in my throat", or, "Because my disease progresses". I think it is that easy.
However, things are more complicated because sometimes things don't work so simple in reality. In fact, some people choose not to be on a ventilator even when they have difficulty breathing. People discuss that it is up to his/her decision or this or that. Let's look at the problem here.
You can read a short summary below. I have written longer and more detailed discussions concerning this issue in some books if you want to know more (this is why I put the footnotes*01). Some of you might want to criticize what I wrote here. I welcome all criticisms from you. However, since I omitted many points here to make it short, I would like you to read my longer and more detailed discussions concerning this issue before you criticize me.
To begin with, some people think it is very hard for a person to use a ventilator on one hand. Other people say being on a ventilator is not something special on the other hand. I would probably prefer to use a ventilator even if it is hard since not only is it related to my own life but it also makes me have difficulty breathing. Still, it is better if this is not a hard thing. How is the reality?
According to people who think being on a ventilator is not a big issue, a ventilator is just a tool or accessory, such as "glasses" or "pierced earrings". Some agree with this view, but others may get annoyed or angry about it. Well, both of them seem to make sense. I was wondering how valuable a ventilator is.
As you learn in school, breathing is the process of inhaling air, choose and sending oxygen in the air to blood, extracting carbon dioxide from blood, and exhaling it back to the air. Surely, it is a big and complicated process. Since a person with a breathing problem has his/her muscular power weakened, it becomes difficult for him/her to inhale and exhale air. A ventilator only compensates for the air movement. The remainings are conducted by his/her lung. Based on this fact some people say a ventilator is like an "air fan"*02. Surely, it seems the term "ventilator" has such meaning (I understand that the term "respirator" has a different meaning, but I do not know its details). Given this perspective, we have lots of such tools or machines. For example, glasses are just "lenses" (lenses for compensating for eye lenses).
In addition, we use machines with much more complicated functions. A dialysis machine is one such example. This machine takes care of the work which is conducted in the kidneys-- filtering blood. It is possible to say the machine does a very sophisticated job. Today, many people use the dialysis machine and few people think they are not supposed to use it.
Using a tool is not a bad idea even if it conducts complicated jobs or simple jobs, or important jobs or easier jobs. You can use the tool. Among such tools/machines, what a ventilator conducts is simple although it conducts important jobs.
We are cooperative beings. Nobody finances/makes many of necessary things by oneself. The ideas of living "thanks to everybody around one", "not only by one's effort", and various things "enable one to live" are considered good in our society. Using a ventilator to live is just a part of them*03.
Actually, many people who use a ventilator make the effort by themselves on one hand. For example, they try to adjust their own airflow to the movement of the ventilator. Doing so is not easy--it can be painful in some cases. On the other hand, the others without the ventilator are not even aware of their own breathing. Therefore, people using the ventilator should not think that they rely on the machine completely without doing anything by themselves.
When I say it is natural that we arrange it so that a person can breathe easily if he/she has difficulty breathing, some people argue that the situation of what I mention is different from the one in this case since this is the matter of the "terminal phase", not the one in which he/she accidentally sticks a piece of rice cake or something. It makes some sense to me. However, it is also true that the term, "terminal phase", is used in unclear ways. As far as we know, it should mean that the end (= death) is coming soon. It seems to have no difficult meaning. Actually, however, this term is used in two ways.
Firstly, there is a time when the end of a person's life comes whatever he/she does. Some people fall into such psysical situation. It is difficult to judge whether a person is really in such situation. Is it a good thing that the a hole is made within the body of the person in the situation and a machine is put on his/her body? It might not be good.
On the other hand, there is another case in which a person's life cannot be maintained if "we leave his/her situation as it is". For example, there is a case in which no breathing assistance could make a person's breath weak so that it cannot sustain his/her life, and thus, it could lead to his/her death. And people who decide whether they are on a ventilaor or not, including intended readers of this book, are categorized as this case. And it is regarded as the "terminal phase".
However, this sounds strange to me. There are many cases in which a person dies unless we do what is necessary to maintain his/her life. I think it also applies to cases in which a person loses blood as a result of accidents, or he/she has serious diseases including stroke and pneumonia. If he/she has cancer, removing his/her tumor can enable him/her to live longer. Therefore, I do not agree about the way since all of these cases are regarded as the "terminal phase", what needs to be done to sustain his/her life is not conducted. It also applies to diseases including ALS. Still, if some people regard them as (self-)determination under end-of-life treatment, those people need to correct their attidudes. And after all it is good to do what is necessary for a person's life/living.
Compared with such tools as glasses, a ventilator is bigger and its shape is exaggerated. There is a person who wrote that she was very shocked to find herself with a ventilator after losing her consciousness due to breathing difficulty. Since not many people get accustomed to seeing a ventilator in their daily life, they are socked when they see one. As there is a saying, "Something is held to the throat", the ventilator is connected to such part of his/her body. It seems more serious than putting something on his/her hand/leg, or wearing glasses.
Fortunately, however, people can get accustomed to new things. Since I have never used a ventilator, I have no idea about how I feel about it and whether I can get accustomed to it. According to people who use a ventilator, they get accustomed to the machine itself soon. Some even see it as reliable and they get accustomed to using it. Their surroundings also get accustomed to the sight of a person's wearing it. Although I do not meet the person with ventilators so often, I already get accustomed to the sight. We get accustomed to most things. Although getting accustomed to things is not always good, I suppose it is good in this case.
However, can being on a ventilator be subject to more constraints of a person's actions, including difficulties of moving his/her body and of letting out his/her voice? It surely is a hard thing. Still, it is not always true that such constraints are made only by a ventilator. For example, aside from being/not being on the ventilator, some people can have difficulty letting out their voice due to their muscle deterioration. On the other hand, if a person can let out his/her voice, he/she can continue letting out his/her voice even with a ventilator in some cases. Since I believe specialists in the area will write about it properly in the future, I do not deal with it any more. Anyway, since a ventilator is a simple machine originally, I just hope that its usability will become much better, and it will become easy to carry.
What is more important is to create a desirable environment for the living of the person with a ventilator. What many people get thoughtful about this is that it would be very hard for a person to stay alone in the same place in the same position all the time. It is a wild thought that they have to get accusotmed to the situation. It is necessary to change the environment for them, not to make them suitable for the environment.
If the environment remains the same, I think it should be cruel to tell the person to "live"his/her life. However, it is, for example, the hospital official he/she stays at that he/she tells that he/she is not on a ventilator (i.e., I will stop living). In other word, the person insists that this hospital (where I stay) be a terrible place as if he/she felt suicidally. Then if the hospital official responds that the person with a ventilator should die, I do not think it is fair. There are several things that can be done so that the person with a ventilator can have more fun/not boring/painless life. I think it wrong for the person with a ventilator to stop living because his/her life is hard or he/she will have to live a hard life from now on. Before doing so he/she should do what is necessary.
A person's life varies with his/her body condition. The number of what he/she cannot do will increase. It is surely comfortable for a person to do something. However, even if there is something he/she cannot move by himself/herself, his/her daily world exists there and he/she can receive its various situations and changes. He/she can enjoy its changing world.
It depends on a person concerning how much he/she can enjoy the change. However, the point is that he/she compares the enjoyment with what. If there is something which reduces what is hard and has some good points, then it is better for him/her to have it than her/his disappearing from the world completely. I think it is better to start discussion from this simple point.
Today, it is considered that it is a person that decides whether he/she is on a ventilator or not. Although doctors and the person's families used to make such decision, the atmosphere changes and he/she has to decide it by himself/herself. And it is considered that the medical staffs and others should remain neutral. I think that this is considered natural.
However, I think it is strange to ask a person whether he/she is on a ventilator or not.
The main reason I consider so is that this scene is actually a matter of life or death for him/her. Asking this question (whether he/she is on a ventilator) means asking him/her to decide whether they live or die. Normally we do not ask such question unless we offend somebody. And when somebody says that he/she wants to die or he/she is worrying about whether to live or die, it is not natural to tell him/her to do as he/she likes. Rather, we tell him/her that he/she should not do so. In this case, it is natural that you ask him/her why he/she think so at first, not which way he/she prefers.
If you do what he/she says in this case, it basically means assisted suicide. Doing so is not good unless you consider assisted suicide is appropriate. Under the current Japanese law a person who conducts assisted suicide is accused of a crime. Of course, there is another way of thinking in which assisted suicide is good despite the current law. However, it is necessary to understand the fact that accepting a person's decision not to be on a ventilator, or his/her decision to take it off, means accepting and assisting death and that accepting it means accepting suicide and assisted suicide.
Let me declare my opinion about this. I do not think that all suicides should not be accepted. Therefore, I am not in a position to say that I could not disagree with suicide more. Yet I think that he/she should think better of it in most cases. I would at least say so to a person who wants to die.
It is sometimes said that on one hand not putting on a ventilator means "non-start (of treatment)" and thus is not a positive act . Therefore, it does not mean killing and assisted suicide. On the other hand, if you take off a ventilator which a person puts on,it means an active act--that is, murder and assisted suicide. If so, not putting on a ventilator is allowed while taking it off is not. Thus it is said that a person should not put on a ventilator. What this means is that the person should not put on a ventilator from the beginning because it is not allowed to take it off once he/she puts it on. Consequently, the person has early death. And it is also said that it should be allowed to take off a ventilator (so that he/she can put it on easily).
Although not putting on a ventilator and taking it off are surely different, they are not completely different.
For example, in case a person takes off a ventilator, his/her life will end soon in many cases. On the other hand, in case a person decides not to put on a ventilator, his/her life might not end so soon. In the latter case a person can stay calm because he/she does not know when his/her life will end. It is very fearful for a person to expect his/her death certainly. Therefore, the difference can be big in some cases.
Apart from this difference we should understand that not putting on a ventilator and taking it off are basically the same. It is wrong to insist that taking off a ventilator is assisting suicide and not putting on the ventilator is fine because it is not illegal. To get straight to the point, both are assisted suicide (The point is whether it is completely different between a case in which you do not switch the ventilator on although you know that it leads to a peron's death and a case in which you switch the ventilator off although you know it leads to his/her death).
Therefore, basically it is either neither of these two is accepted or both of them are accepted. Some academics insist that we should accept all acts including administering poison since all acts, even if they are passive or positive, lead to the same result. In contradiction to this, it is reasonable to consider that if it is a problem to take off a ventilator, then not putting it on should be also considered as such. Basically, I think we should think so.*04
Then, what specifically should a person do if he/she wants to take his/her ventilator off after he/she puts it on? Although I cannot think of a decisive answer for this, l have a few ideas.
One way is only to advise a person not to say such a thing even if he/she might say that he/she wants to take his/her ventilator off every day and the his/her surroundings have to listen to his/her plea every day. Keeping this conversation is not so troubling compared with a situation where it is difficult to persuade a person who can kill himself/herself to stop dying.
Even if a person would like to take off a ventilator because of pain, getting rid of his/her pain by dying is the last measure. Rather normally we do not consider removing pain through death as a measure for removing pain. I believe that something can be done during his/her lifetime.
There might be a case in which a person has a dead wish to take off his/her ventilator. In this case if you assist him/her death you have no choice but to serve a sentence. Surely it can be argued that the sentence be commuted since the act is conducted with your "goodwill". However, a lot of other assisted suicides are probably conducted with goodwill. Then, is it good to give preferential treatment to people who conduct assisted suicide in this case? I do not think so.
Now let me consider self-determination. Why is asking a person what he/she would like to do and following it regarded as a good thing? It is sometimes said that your not listening to what an invloved person says in consideration for him/her means that you do not treat him/her as an adult. In other words, it means "paternalism"under which you treat him/her as a "child". Although the statement sounds reasonable, we should carefully examine this point.
The reason asking a person what he/she would like to do and follow him/her is regarded as good is that he/she knows better about what is good/bad for himself/herself than others. It is true that he/she knows what tastes are good/bad to him/her. Since he/she knows about himself/herself, asking him/her or letting him/her decide is considered as natural. Surely this is good.
However, in this case a person has to decide what he/she has never experienced-- ventilator use. It is sometimes said that he/she should decide it before he/she cannot convey his/her intention or before his/her condition becomes serious. It is called "advance directive". Some people say that advance directive is a good thing. However, in this case I do not quite understand its advantages.
First, it is clear that the person does not understand what ventilator use means. Still, he/she has to decide what he/she does not know about. I assume he/she should face difficulty deciding what he/she does not know about in advnce. As presented above, one of the good things concerning self-determination is he/she knows better about what is good/bad for himself/herself than others. However, in this case since the ventilator is what he/she has never experienced, he/she does not know about it. Therefore, self-determination is not the best answer here.
Thus, when the person thinks about the ventilator, all he/she can do is either to imagine a scene where he/she would be on the ventilator or consider it after becoming acquainted with it. What this means is that he/she considers such situation as the situation which falls within death. This is rude for persons living with the ventilator.
Moreover, a person's feeling can change even after advance directive. Then it is argued that advance directive can be changed. What this also means, however, is that advance directive has little meaning.
On the other hand, if the person conveys the change of his/her will, he/she fails to convery it well at the last moment in most cases. Since he/she cannot decide what to do after he/she gasps out, does it mean that he/she decides just before the last moment? I assume it must be difficult for him/her to consider such serious issue and say his/her decision in such a situation.
In addition, under such condition in which the person has to consider such thing, he/she usually gets depressed and overclouds. Is it appropriate to ask him/her to decide by himself/herself since this requires self-determination?The second reason why self-determination is preferred is that other people double-check a person's decision because it is convenient for them to do so in many cases. For example, some care facility workers might tell residents to go to sleep early (for residents' health) at night since the workers would like to go home early. Under such situation, the residents cannot live as they like. In order to prevent such intervention it is better to ask what the residents would like to do and prioritize such requests. In this kind of case self-determination is effective because it protects the residents from the trend in society.
The situation is slightly different in case of a ventilator. If the social trend tends to let a person survive, decision to die can mean resistance to such trend. In fact, it is said so in some cases. Some people believe that modern medical care provides a lot of medcial care on its own regardless of a patient's condition. Other people believe a patient's families tend to ask the doctor to provide life-prolonging treatment regardless of the patient's will.
We are not unheard of such things. However, we also have the opposite situation. When a hospital once made profit by keeping a person hospitalized and providing various treatments for him/her, there were some cases in which a medical professional got the person to stay at the hospital and provided medical treatment. However, such "needlessness" has been reduced gradually and now providing a lot of medical treatments makes no business sense and the more treatments does the hospital provide the less profit can it make. As a result, the medical professional tends to hesitate to provide even necessary treatments for the person. And families' accepting the total care of the person is a huge burden for them. This situation is different from the situation in which the family requests the medical professonal to extend the person's life by cardiopulmonary resuscitation in order to be with the person when he/she passes away. It is highly possible that the family becomes reluctant to extend the person's life.
Today's mainstream tendency is to stop the person's life early rather than to let the person survive. What this means is that allowing the person to have freedom to die does not function as what protects the person against the social trend. Rather it functions that the person considers the burden of his/her surroundings and meets their expectation.*05
Therefore, it is found out that just letting the person decide is not accepted.
In the end, the remaining factor we need to consider is how a person should live with a ventilator after he/she is on the ventilator. This accounts for why a large percentage of the persons hesitates to be on a ventilator. Care is necessary in order for the person to live. Even if the ventilator assists the person's breathing, it is necessary to have other various things. Some persons can move other parts of their body except for breathing and others cannot do so.
In reality, the family of the person with the ventilator spends most of their time taking care of the person both before and after the persons is on the ventilator. It seems it cannot be helped.
The person also thinks about this. What worries him/her most is that he/she has to ask others to take care of him/her. He/She might hesitate to do so in some cases. Those who have worked for others until now might consider this.
I think that such feeling of the person is natural. Still, I advise him/her to reconsider this. If what the person has worked for others until now is considered good, it is good because he/she has worked to live and it has worked for good things. In other words since living is good, working for living is good, too. Therefore, It is like putting the cart before the horse that the person tries to stop living because he/she cannot work anymore. He/She does not have to hesitate to live with the help from others.
Since care is necessary for a person with a ventilator, get as much care as he/she needs. Even if the person can think so, he/she needs to have care for his/her living in reality. Then, he/she considers that it is impossible to do so under his/her current condition, and consequently, he/she thinks he/she will stop living. Even if he/she does not think so, he/she is forced to stop living.
Although it is said that supporting the life of the person with the ventilator is very hard, it is not so much. As stated above, the ventilator is a machine of no particular distinction- it can be said to be simpler than a microwave or refrigerator. The ventilator is not cheap because its market is small. It is no wonder that it could be much cheaper. And the person with the ventilator does not require any expensive food or drink. What is necessary for him/her, other than the above, is the ordinary. What is additionally necessary for him/her is only human resources. A ventilator just requires a bit more hands - it requires some more care by more people. Although I cannot explain the details here, at least now and from now on we have ample human resources. It cannot be short of hands.
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.
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.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.
*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.