- Seiji Bito, Kazuki Chiba, and Atsushi Asai*
*Department of Biomedical Ethics, School of Public Health, Kyoto University Graduate School of Medicine, Kyoto, Konoe-cho, Yoshida, Sakyo-ku, Kyoto, 606-8501, Japan
Eubios Journal of Asian and International Bioethics 13 (2003), 147-151.
The patient was 78-year-old woman who had long suffered from chronic obstructive pulmonary disease (COPD). From the medical standpoint of view, she was expected to survive another decade unless acute exacerbating events such as pneumonia happened. No prior discussion regarding end-of-life care including life-sustaining treatments had not so far been held among medical professionals, the patient, and her family because they thought that such a discussion might bring bad luck. One day, the patient experienced sudden and severe respiratory distress and cardiopulmonary arrest followed. An ambulance arrived immediately and she was brought to the nearest emergency department. In the emergency center, the patient was intubated and mechanical respiratory support began. Chest tube was also inserted in order to treat pneumothorax of her right lung. The patient became alert next day. Her medical condition improved and she could make conversation by means of writing. However, it was estimated that it would take from several weeks to several months to wean her from mechanical ventilatory support.
Several days later, the patient pulled her tracheal tube by herself. She could manage to talk with her physician. The physician in charge attempted to support her respiration by using a oxygen-facemask, but the patient got rid of the mask immediately, saying that the mask made her feel suffocated. The physician tried to persuade her to let him intubate her again to restart respiratory support by explaining that it was highly likely for her to suffer serious and lethal respiratory failure again soon or later. Nevertheless, she responded that she had already been tired of medical intervention she underwent and she would prefer lapse into dyspnea and die rather than be intubated and have artificial ventilatory support. The physician asked the patient's family to persuade the patient to have mechanical ventilatory support again. The family's persuasion was successful and the patient accepted being intubated and respiratory support again.
Unfortunately, the patient's current respiratory function was poor enough to make it impossible for her to wean from mechanical ventilation and her medical conditions required to form tracheotomy for further respiratory support. Tracheotomy would allow the patient to take sufficient time to rehabilitate her respiratory function and might make the possibility of her weaning from mechanical ventilation higher than otherwise. Even if weaning from respiratory support turned out to be unsuccessful, she could possibly survive several more years by using respiratory support through tracheotomy. The patient's family (the patient's daughter) agreed with the physician's recommendation regarding performing tracheotomy, but the daughter was uncertain about what her mother (the patient) would want. Being recommended to make tracheotomy on her neck, the patient answered by means of writing that she would want not to form tracheotomy if there was a certain possibility that she had to be connected to ventilation machine forever. Psychiatric evaluation revealed that although ambiguity existed regarding her mental states, but she was not, at least, suffering from major depression.
Now, medically speaking, a decision about tracheotomy should be made in only a few days. If tracheotomy were not made, the physician would have to pull her tracheal tube out. It is very likely that she will lapse into lethal respiratory distress and die within several hours (or days) without artificial respiratory support. In contrast, at the same time, it is not impossible for her to survive discharge although chances that she can maintain her respiratory function by herself are very slim. The patient's daughter told the physician that she and the rest of her family strongly wanted the patient to survive as long as possible by forming a tracheotomy although she felt obliged to respect the patient's refusal of medical intervention if the latter was to experience severe suffering. The daughter also mentioned that her mother was worried about financially and psychologically burdening her family by surviving with expensive medical support, but that the daughter and the rest of her family did not mind such burden at all.
Should the physician continue to recommend the patient to form tracheotomy? Should the physician pull the tracheal tube out from the patient without forming tracheotomy if the patient refuses to form it?
Medico-Ethical considerations: Commentary by Seiji Bito
Health care professionals are liable to be excessively paternalistic for those who use health care, particularly for patients. It is not uncommon that medical interventions that the health care professionals thought beneficial to the patient are not, in reality, desirable for the patient and can seriously cause suffering to them. At the same time, patient autonomy is considerably taken into account when health care professionals judge about the ethics of medical interventions.
Is the patient terminal?
Is the patient in question in a terminal stage? She is suffering a slowly but progressively exacerbating incurable disease and because of the disease she currently has severe chronic respiratory failure. The chances that she will die of the disease within a couple of years is high. In that sense, she might be regarded as terminal. In contrast, if we could not predict her prognosis and how long she can exactly live, it would be problematic for us to consider that the patient is terminal. What is important is whether or not the patient thought that she had already been at the end of life. However, we cannot know this with certainty. Furthermore, it should be noted that the patient, her family doctor, and her family has not discussed desirable end-of-life care as well as advance directives at all. Therefore, I would argue that we should not jump to a conclusion that she is terminal.
Benefits and risks involving in forming tracheotomy.
Now I would like to discuss whether tracheotomy benefits the patient. The aim of tracheotomy is to maintain long-term artificial respiratory support and introduce home respiratory treatments. If that is the case, what kind of problems are caused by performing a tracheotomy? Certainly, the patient will lose her voice, i.e. loose the ability to speak for a certain period of time. It is not difficult for us to imagine how sad it is for her to loose her voice. In addition, it is undoubtedly invasive and intrusive to place something alien deep in the patient's body. Such an act can decrease her quality of life and offend her dignity as a person. From the patient's standpoint of view, it would be very natural to say, "I would rather die if I had to have a tracheotomy formed in my throat."
On the other hand, from the health care professional's standpoint of view, tracheotomy is one of very common procedures and it takes only half and hour to form it by virtue of local anesthesia. Medically speaking, tracheotomy is much more comfortable than being intubated and alleviates the patient's pain and improves her QOL. In fact, tracheotomy makes respiratory distress better and drainage of sputum easier. Medical professionals should inform the patient these benefits and make it clear why the patient hesitates to have tracheotomy. Physicians should attempt to demonstrate the reason why; does the patient refuse to form tracheotomy because she is worrying about resulting physical suffering or because she regards it as offensive to her human dignity? We should distinguish in this regard. The main concern is the fact that it is very likely that the patient will need artificial respiratory support via tracheotomy for the rest of her life. Tracheotomy may alleviate the patient's respiratory distress, but it is also true that her suffering is still severe.
What is her best interest from the medical point of view? Medical professionals can probably estimate the severity of her suffering and inconvenience very well although such estimation is not perfect. In addition, there is a chance that she can be weaned from artificial respiratory support to a certain degree although it is rather slim. Taking into consideration that tracheotomy is likely to alleviate the patient's suffering that she is experiencing now and that many patients with respiratory failure are actually leading a everyday life with respiratory support, I would argue that forming tracheotomy will be more beneficial than otherwise. It should be noted, however, that we should also take into serious consideration the fact that she has to lead a life with severe restraint and suffering caused by respiratory support, that she looses her voice, and that she thought that she has already lived long enough. I would claim the balance suggested by a comparison between benefits and risks that she may have to experience is against performing tracheotomy. Therefore, it is fair to say that benefits that she can enjoy by forming tracheotomy are not so high and we can not override her autonomous decisions in the name of the patient's best interest.
In my opinion how to evaluate the patient's wishes not to have a tracheotomy is an important task. She may be depressed, but not suffer from clinical depression. In any case, she is physically and mentally tired extremely. In reality, there is no time to treat her using antidepressants and determine whether or not she is clinically depressed. Should physicians override her wishes because she is depressive even if she is judged not to have clinical depression? I would argue that overriding her wishes goes too far. It should be make clear that health care professionals should consider decision-making capacity intact unless there is clear and convincing evidence indicating patient's incapacity.
Another important point is to what extent health care professionals should take the patient's family's wishes about the care of the patient into consideration when the treatment plan is decided. In general, the wishes of the family are considered and respected as surrogate decision when the patient is judged as incompetent. In this case, however, we should not forget that the patient could feel beholden to her family for the latter's physical, emotional, and financial support and that at the same time the family strongly desires the patient's survival. It would be problematic for medical professionals to respect the patient's refusal to form a tracheotomy if the refusal was raised from her feeling beholden to the family. This is because such an autonomous decision may not be authentic or voluntary. Furthermore it is not difficult to speculate that the family's wishes that the patient survive as long as possible can partially be stemmed from the family's possibly unconscious wishes not to play a decisive role to abandon their loving mother to her fate. Therefore, health care professionals should read their thoughts in their eyes and facilitate communications between the patient and the family. After achieving the task, we should decide what to do mainly based on the patient's expressed wishes.
Should we, health care professionals, continue to persuade the patient to undergo tracheotomy? I think we should do so. Health care professionals, together with the patient's family, should inform the patient of likely consequences and let her know how the former interpret the patient's "best interest." Then, if the patient refused to do so we should respect her wishes. Although pulling her tracheal tube off might constitute doctor's actively fastening the patient die if she could not survive without tracheotomy, such an act can be considered, I would claim, valid and justifiable medical interventions. This is because the action was based on the patient's voluntary decision. It is also because the action can be regarded as therapeutic intervention that could improve her medical conditions (as mentioned before, there is a certain possibility for her to survive without artificial respiratory support although the chances are slim) as well as her QOL and therefore the action should not purely be considered the withdrawal of life support.
On the contrary, is it justifiable for us to form tracheotomy against her refusal? I would oppose the view that we should respect the patient's autonomous decision whatever it is. I believe that in some occasions health care professionals should consciously and paternalistically override the wishes of patients and provide them with medical interventions that are expected to give very high benefits to them. In the case in question, however, I do not think that expected benefits given to her by mandatory tracheotomy is not high enough to justify involuntary medical interventions. All relevant matters being considered, health care professionals, especially physicians, should respect the patient's refusal. Under these circumstances, we should do all possible interventions in order to help her wean from mechanical respiratory support in limited time. If the patient unfortunately suffered from lethal respiratory failure then, health care professionals should help her die peacefully and we would be present at her deathbed.
Legal considerations: Commentary by Kazuki Chiba
In this case, patient's right to self-determination conflict with physician's rights to discretion in life-and death-decisions. In the following I will briefly analyze this difficult case from the legal standpoint of view.
In regard to "death with dignity"
Legally speaking, in Japan, legally, the legitimacy of "death with dignity (DWD)" can be considered only if a patient in question is judged terminal. In my opinion, the patient in this case cannot be regarded in the terminal stage although she is alert and intolerably suffering and, therefore, legal requirements that justify DWD are not satisfied. In addition, the patient's wish not to form tracheotomy if there was a certain possibility that she had to be connected to ventilation machine forever cannot necessarily be interpreted as desire to die, i. e. refusal of life-sustaining treatments.
In this case, if the physician who is caring the patient sufficiently informed the patient of relevant matters regarding tracheotomy, withheld to form it according to the patient's valid refusal, and pulled the tracheal tube off from her, and also if we could legally be considered that all legal requirements for DWD were satisfied, the physician would not probably be prosecuted for a murder or the abetment offence in criminal action and be brought for default or tort liability in civil action. Again, in this case, although pulling the tube off from the patient may be considered as termination of medical treatments, she cannot be regarded as terminal and her wishes not to undergo tracheotomy cannot be interpreted as her valid refusal against tracheotomy. Therefore, this case does not satisfy the requirement that allow the physician to pull the tracheal tube off from her, terminate medical interventions. As a result, if the physician didn't undergo tracheotomy and pull off the tracheal tube off in spite of the patient's valid refusal, the physician potentially be prosecuted for a murder or the abetment offence. On the other hand, if the patient were informed about tracheotomy and were actually understood that she would be die sooner by refusing tracheotomy, by forming tracheotomy without the patient's consent, the physician would be brought civil action for default or tort liability. As mentioned before, however, we cannot interpret her nugatory view about tracheotomy as her refusal for DWD. Hence, legally speaking, the physician should act according to the best interests of the patient and should form tracheotomy, informing the patient's family of relevant facts in this intervention. For, there exists no valid refusal
One of my main concerns is whether or not the patient is capable to consent or refuse medical interventions. If the patient did not have a sufficient capacity to consent tracheotomy, her refusal in this regard would also be judged as invalid. The patient is 78-year-old, but the age of the patient is not directly related to her or his decision-making capacity. A psychiatrist in this case diagnosed that the patient was not clinically depressive, but it does not follow that she is competent enough to consent or refuse tracheotomy. On the contrary, she could be competent even if she is diagnosed as depression. The physician must not assess decision-making capacity only because the patient suffers from mental illness. There is no legal criteria or clinical guidelines concerning how to judge patient's decision-making capacity in Japan. Under these circumstances, on determining patient's decision-making capacity, I would claim that physicians should take into consideration the consistency and stability of the patient's preferences, other's undue influence, and insufficient or false information.
In this case, did the physician inform the patient that pulling her tracheal tube off without tracheotomy is highly likely to result in her fastened death; did the physician inform that tracheotomy may improve her quality of life and possibly make her to wean from mechanical respiratory support? Is the patient's refusal against tracheotomy and consent to withdraw artificial respiratory support really depended on her actual understanding on sufficient information? We cannot apply the same and simple rule to all of the patients whose competency we have to determine without careful deliberation.
The physician is not legally required to disclose and explain medical information to incompetent patients, but it is important for the physician to explain such patients clearer and easier.
Patient's right to refuse treatment
The patient in question has expressed the wish not to form tracheotomy if there was a certain possibility that she had to be connected to ventilation machine forever. In contrast, her family in cohabitation with the patient wants her to accept tracheotomy so that she can live as long as possible. The patient's daughter mentioned that her mother might be worried about financially and psychologically burdening her family by surviving with expensive medical support, but that the daughter and the rest of her family did not mind such burden at all although she felt obliged to respect the patient's refusal of medical intervention if the latter was to experience severe suffering. Despite the fact that the patient said that she would rather respiratory support pause if she had to live connected to machines, this statement of hers, in my opinion, could not be certainly interpreted as wish to die. The daughter's statement might be not a substituted consent for tracheotomy, but rather her expressed preferences in this regard.
What the law wants is to know whether the patient is capable to consent or refuse medical treatment and the decision is valid. As long as the patient is judged as competent and her refusal can be valid, her refusal must be respected and the family (the daughter)'s substituted consent cannot be accepted. However, regardless of the patient's competency, the family's opinions in the care of the patient can be one of the important elements in medical decision-making.The daughter's statement, "Our mother might be worried about financially and psychologically burdening us by surviving with expensive medical support" should be taken into serious consideration to deliberate the validity of the patient's refusal. Nevertheless, it should be addressed that further consideration is needed to decide whether or not we can regard the family's (daughter's) consent as valid surrogate decision-making.
If the competent patient is sufficiently informed by the physician and refuses the medical treatment, the physician, in principle, should respect her refusal. If not, her refusal cannot be accepted as valid refusal. In Japan, legally, the family and guardian of the incompetent adult patient do not have the right to consent medical treatment on behalf of the incompetent patient. Therefore, the physician must inform the family of sufficient medical information and go on explaining the patient herself about predictable benefits, harms, and risks. The family should also relieve the patient of her anxiety that all the family member did not mind burden caused by the patient' long term care at all.
In the situation where tracheotomy is required in emergency, the physicians could be allowed to do so based on his or her discretion, but in this case, decisions about tracheotomy is not urgent and therefore the physician is required to obtain informed consent from the patient in question. The physician in the case admitted that the patient could not certainly predict the patient's future quality of life. Apparently quality of life consideration is important element in making decisions regarding tracheotomy and, therefore, the content and quality of the physician explanation given to the patient is a key question. I think that it is not legally permissive for the physician to form tracheotomy in spite of non-emergency against the patient's refusal in the first place and subsequently discuss further medical interventions with the patient after tracheotomy. I would argue that physician's discretion could not justify such an act. Again, tracheotomy is not urgently required in this case and the physician's discretion cannot override the valid refusal of the alert patient. Informed consent is undoubtedly required.
In conclusion, from the legal standpoint, it is very difficult to conclude either that the physician should form tracheotomy or that he should pull the tube off from the patient without tracheotomy. Further discussions are essential and both medical professionals and judicial professionals need to jointly establish ethical and legal guideline in terms of life-sustaining treatments.
Further questions: Commentary by Atsushi Asai
In the following, I would like to address several further ethical problems. They will include: Can a medical profession or clinical ethicist really know what is beneficial or what is harmful to a patient? What is truly voluntary refusal to life-sustaining treatments? Can we force a physician to do what can legally be problematic?
Can we, medical professions or clinical ethicists really know what is beneficial or what is harmful to a patient?
I always wonder if I can really experience myself what a patient has been going through. Can I really know what the patient in question suffers, what she is feeling, and her true thought and deep sentiment for her life? Ethical considerations should be universal and impartial. However, I am half as old as her, I have never experience respiratory distress in my life, I am not a woman, I have a different relationship with my family. I could be completely different from her. Under these circumstances, can I experience myself what is important to her and can my decision regarding her end-of-life be the same as she makes?
Frankly speaking, I would not be able to say, "I have lived long enough." I can rationally understand her claim that she would rather die if she had to burden her family psychologically and financially. It is not certain about how I would feel if I were her position. In this sense, the difference in age, gender, or other characteristics between a patient and physician could be very important in some occasions. Furthermore, medical professionals often do not know how she has been living her long life so far.
What I would want audience to understand is difficulties in mutual understanding between patients and health care professionals. What I hope to share with readers is difficulties or, sometimes, impossibility to experience one what somebody else has gone through even by using maximum empathy and imagination. Even patients in our patient's age, i.e., seventies or eighties may response to the same situation quite differently. You cannot live other's life. Healthcare professionals sometimes use the concept of quality of life relatively easily. It should be noted, however, that we have to recognize difficulties in mutual understanding and in knowing patients as individual persons when we discuss the patient's quality of life. By the same token, in a restrict sense, even the patient's family may not able to speak for the best interests of the patient, taking her suffering and wishes into consideration.
Hence, the conclusion I would draw from my arguments above is that we should in principle respect the wishes of the patient when she is alert and able to say what she likes or dislikes. We should primarily build our ethical deliberation and arguments on the pessimistic but realistic recognition that we cannot understand others deep enough and that it holds true when the others are family members.
Is it impossible for "depressive" patient to make autonomous decisions?
Decision-making capacity of the patient in question could be restricted by her depression. However, I would argue that it is quite natural for an individual to be depressive if the one is put in the same situation that the patient has been experienced. Because, as I have just discussed above, I am clearly aware of my limited ability to imagine and sympathize with the patient, I will humbly think of "depression" in this case at the risk of self-contradiction.
Who could escape to be depressive if the one had to suffer from endless respiratory distress, loose one's voice, punch a hole in one's neck, and was confronted with the possibility that one must live being connected to large and complicated machine? In this case, can we distinguish "abnormal" depression from "normal" or "natural" depression? If the distinction is not clear enough, I would argue that, it is prudent for us to think that the patient maintains her decision-making capacity if she is suffering from "normal" depression or that she can refuse life-sustaining treatments even if she is judged incapable because of "normal" depression. This problem deserves to deliberate. Of course, the claim that a patient who is suffering from delusion or hallucination can refuse life-supporting interventions is surely out of the question. By the same token, it is not justifiable to accept treatment refusal made by the patient who is disproportionably depressive; for example, we should not allow the patient who is depressive due to mild depression to commit suicide if he is claiming that I would rather die if I had to live with mild depression. How about our patient in the case in question? It can be argued that her depression, although the psychiatrist diagnosed her as not major depression at least, is quite natural and proportional to her serious conditions. I dare to say that we should take suffering of the patient who is judged as incompetent seriously and that it is sometime ethically permissible for us to accept treatment refusal requested by such a patient. Some patients chose voluntary euthanasia because they were dying of AIDS and others committed suicide because they could not accept live with completely paralyzed extremities. Were they abnormally depressed? I think not. Similarly, I would argue that she is naturally or normally depressed even if she is diagnosed as clinical depression. Antidepressant cannot change her real life problem.
"I do not want to burden my family"
As far as I know, it seem not rare for patients to refuse life-sustaining treatments because they think that they would want not to burden their family financially and emotionally. On the contrary, the patient's refusal based on their care for the future well being of the family may be one of the main reasons for treatment refusal. However, we should cautiously distinguish the patient's wish, "I do not want to burden my family" from felt obligation, "I have to die because I ought not to burden my family." Even if such sense of obligation may come from internally without any duress, treatment refusal based on such intension should not be respected without serious reflection. In this case, the patient's family will be apparently willing to care their loving mother. Therefore, the patient should be fully informed that her family want to care her and hope that she can survive as long as possible. Notwithstanding, if the patient explicitly wanted to avoid burdening her family in any sense and wished to die rather than lived dependently, her preferences in this regard would be sufficiently informed and should be accepted as authentic intention. I do not know what makes her feel in this way.
One makes life-and-death decisions autonomously, but it does not follow that the one considers solely of one's own business. We always lead our personal life in relations with many others, especially with family. Therefore, the patient's wish that she would want to die if she had to burden her family should be respected as far as the preferences is fully informed. In contrast, what is absolutely unacceptable is to suggest the patient that she should die on behalf of her family. I suspect that some family in other cases might hope their patient's earlier death and request medical professionals to forgo life-support. In such cases, it is quite problematic for us to use a principle that family members should be the final decision-makers for incompetent patients.
Can we force a physician to do what can legally be problematic?
Can we force a physician to do what is ethically defensible, but at the same time, can legally be problematic? This is probably one of the most worrisome problems in the actual clinical setting. No matter our best ethical thinking says about the legitimacy of pulling a tracheal tube from the patient with respiratory failure, most physicians would not do so if the law prohibited. At the same time, in my opinion, they should not be blamed for not doing so. I would argue that, ethically, extubation (pulling a tracheal tube from the patient) based on the patient's refusal constitutes respect for her right to privacy and cannot be illegal. Therefore, our ethical thinking requests the law to be changed to allow the physician to do what ethically should be done for the best interest of the patient without having no fear of lawsuits against murder.
In our country, the Supreme Court decided that refusal of life-saving blood transfusion by the patient who is Jehovah's Wittiness should be respected. In my opinion, the same rule can be applied to the case in question. Suppose that an unconscious patient with hypovolemic shock due to massive bleeding is brought to your hospital. You immediately start blood transfusion. A several hours later, the patient becomes conscious, find that he is having transfusion and says to you, "I am a Jehovah's Wittiness and would like you to discontinue transfusion now. I would rather die other than living committing a religious sin." You know that his critical condition is still requiring large amount of blood to survive. In this case, blood transfusion should be withdrawn, as in our case, not withheld. However, I am quite certain that the Supreme Court would require the physician to withdraw blood transfusion from the patient. I would argue that the law ought not to stick to implausible distinction between commission and omission. What is ethically important are good intentions and desirable consequences.
It can be argued that, taking all relevant matters involved in this case into consideration, no one would be certain that it is good to live in the situation described in the case in question. We would be better of living without confidence without evidence. In this case, both the family and physician is recommending the patient to have tracheotomy according to their wishes that she survive longer, not to some kind of rational judgment that she should survive. I think that their strong wishes, "I want you to survive" will be significant to the patient. Nevertheless, our desire, whatever it is and no matter how strong it is, cannot oblige someone else to fulfill it. In principle, we should not touch others in all aspect when others wish to have us to leave them alone. In this context, others include patients as well as family members. In conclusions, although it is completely legitimate for the physician to continue to recommend the patient to forming tracheotomy, it is also ethically imperative for us to respect the patient's refusal.