Themes of study
The study revealed 13 subthemes and 5 themes (Table 2).
Table 2
Themes and subthemes of findings
Theme
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Subtheme
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The LST Decision Act is perceived to be easier than organ donation but does not fit well in an emergency medical setting.
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The LST Decision Act is a legal way to stop life-sustaining care.
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The LST Decision Act is perceived to be an easier and more well-known option.
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However, it does not suit the emergency medical setting always.
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Many family members decide to stop LST first, more quickly and proactively than doctors expect them to.
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Stopping LST is decided on more proactively by the families than expected.
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Stopping LST is first mentioned by families.
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Families decide more quickly to stop LST.
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Stopping LST is about comforting patients without bothering them; thus, decision-makers are no longer willing to try any other option, including OTD.
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For families, stopping LST is about making patients feel comfortable and not experience further distress.
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After deciding to stop LST, neither family members nor the physician want to try additional strategies. Family members do not want to donate organs after LST is stopped.
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Not all instances of stopping LST result in brain death, but LST is stopped before brain death.
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Not all patients who stop LST reach brain death.
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However, once brain death is expected, LST is stopped.
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Since the LST Decision Act, TTM declined and so did the number of potential brain death donors, eventually reducing organ donation.
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TTM decreased.
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The number of potential brain death donors and brain death OTD also decreased.
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LST: life-sustaining treatment; OTD: organ tissue donation; TTM: targeted temperature management
Theme 1. The LST Decision Act is perceived as easing organ donation but does not fit well in an emergency medical setting.
The participants had various perceptions of the LST Decision Act. They stated that it was easier to explain LST decisions than brain death OTD. They also mentioned knowing more about the LST Decision Act than the brain death OTD. They welcomed it as a legitimate way to withhold or withdraw LST. However, participants shared the perception that the Act did not fit well with the actual emergency medical practice.
1) The LST Decision Act is a legal way to stop life-sustaining care.
Participant D: In the end, from a practitioner's perspective, and this is what was felt from before, we could not make decisions to stop LST due to the law (did not exist), but now cessation can be done easily (because the law exists).
2) The LST Decision Act is considered an easier and more well-known option.
Participant D: (LST) is well recognized. It is going on, and the medical staff seems to be actively explaining it as well. Organ donation is actually not well explained if they are not the subject for it (organ donation)… Though they are the subject (of suspected brain death)... they tend to be reluctant about organ donation as well. Even medical staff know how to easily explain life-sustaining care.
Participant F: It is easy to explain the suspension of LST, but there seems to be an obstacle that makes it difficult to explain organ donation.
Participant I: To explain organ donation, I must explain a lot and build up rapport with the family members, so it seems very difficult.
Some participants expressed discomfort, saying that the applying the LST Decision Act to patients could lead to another legal problem for them due to its lack of fitness in emergency settings.
3) However, the Act is not always fit for the emergency medical setting.
Participant C: And I do not know if I am mistaken, but the doctors um... (after) the Boramae Hospital case and the Severance Hospital case, (they) are much more afraid that they will be harmed in various legal cases. If I keep digging, the discomfort is about the decision to stop LST, that is, the discomfort in the paperwork, the legal (aspects). The responsibility will be finally returned to us, the precedent legal (verdicts) that have been given until now show that. So, I think (stopping LST) would have been reduced. I think it’s because (physicians) do not want to be involved in the legal aspect of things.
Theme 2. Many family members decide to stop LST first, more quickly and proactively.
Commonly, participants stated that after the LST Decision Act, the incidence of withholding or withdrawal of LST was more than they expected. It is noteworthy that suspension of LST is often mentioned by the family members before the physician’s explanation, and the decision is made in a short time. They reported that withholding or withdrawing LST is increasingly active in the case of elderly patients. They also mentioned that, in many cases, family members had already come to a decision within the family before meeting a physician.
1) Stopping LST is decided more proactively by the families than the physicians expected them to do.
Participant A: As the law on LST decision is implemented, it seems that families give up their own family members' treatment more easily than before.
Participant D: It seems that there is a strong tendency to give up a little more easily and end a little sooner because of the law on LST decisions. Therefore, even in the emergency room, they have already given up on LST.
2) Stopping LST is mentioned first by families.
Participant I: In the media, the suspension of LST has been promoted. Many people know that part. In many cases, they bring it up first, asking “Can't LST be stopped in this case?” Many people say that. Thus, it is difficult for us to explain organ donation.
Participant B: Um... Honestly, it is a situation where family members have been thinking about ending LST. Even if I do not say anything about it, they seem to already have some knowledge about stopping LST or organ donation and are searching for it as well.
3) Families decide more quickly to stop LST.
Participant B: When I actually tell them about it, because they make a decision faster than I think and give me an answer, most of the time they decide to stop the LST. So, uh, it's a little disheartening. When I hear their decision, or because they decide it earlier than I thought, I think I am a little embarrassed these days.
Participant E: Nowadays, once I get consent to stop the LST, it is just done, and it seems that there are some people who decide to stop the treatment quickly because this has become a culture. Even if it has not been more than a few days, or only a day or two has passed, they decide to stop the LST right away.
Participant E: The decision to stop the LST seems to be made quicker than I would have thought. If in the emergency room, I just say (that in) a brain death presumption state, there are probably many cases where families decided to stop LST much quicker than expected.
Theme 3. Stopping LST is about comforting patients without bothering them; thus, decision makers are no longer willing to try any other option.
Participants mentioned that family members seem to recognize withholding or withdrawing LST as making patients feel comfortable and not distressing them anymore. They stated that family members did not want to do try anything else after they decided to stop the LST. According to them, family members seemed to perceive organ donation as “pestering by adding something” to patients who were medically unable to recover. They said that some physicians also seemed to be unwilling to take action after family members decided to withhold or withdraw LST.
1) For families, stopping LST is about making patients feel comfortable and not making them more distressed.
Participant A: Suspension of LST is just not treating the patient, but organ donation is taking out the patient's organs. First, the family members focus on wishing that they would no longer bother this patient.
2) After deciding to stop LST, neither the family members nor the physician want to try additional strategies.
Participant A: I ask the family that has decided to stop LST, “Then, you want to stop LST, and then how about donating the organs?” If you ask, they all say no. Those who decide to stop LST are um... they do not seem to want to do anything more complicated or emotionally harder anymore.
3) They do not want to donate organs after LST is stopped.
Participant H: Yes, that's right. I think so. They don't want it. They simply want to let the patient go more comfortably. From the moment the consent for suspension of LST is written, the family members have no interest (in organ donation), so the medical staff must follow..
Theme 4. Not all instances of stopping LST result in brain death, but LST is stopped before brain death.
Participants stated that not all patients for whom LST is withheld or withdrawn reach brain death. They also noted that not all patients living with LST—post-cardiac arrest survivors or those with devastating brain injury (DBI)—reach brain death. Therefore, they said that a careful approach is needed to deal with the extent to which the LST Decision Act has affected the decrease in brain death OTD. However, they shared that the number of patients who could have reached potential brain death and whose family members decided to withhold or withdraw LST before they reached that stage have increased since the enforcement of the LST Decision Act.
1) Not all patients who stopped LST reached brain death.
Participant F: On the premise that the medical condition is very irreversible, an explanation and decision to stop the LST is made. However, this does not mean that the patient always becomes brain-dead, so the two are a little different. If you have decided to stop the LST now, there are quite a few cases that do not reach brain death.
2) However, before brain death, LST is stopped.
Participant A: When the family asks, “If this person is brain-dead, then when will it be (declared as) brain death?”, no one can guarantee that, or the time. Then, the families definitely ask themselves, “Do I have to pay all the hospital bills until brain death?” If this happens, they will not be able to donate organs. It seems that families are deciding more often that they just want to stop at this stage rather than continue to struggle. Thus, there seems to be a trend in which people who might become brain-dead die before they actually reach that stage.
Theme 5. Since the LST Decision Act, TTM has decreased and so has the number of potential brain death donors, eventually reducing organ donation.
Participants said that TTM has decreased since the enforcement of the LST Decision Act, and as a result, the number of suspected brain death patients has decreased. However, they said, this decrease could not be attributed to the LST Decision Act. They emphasized that the recent decrease in the survival rate of cardiac arrest patients and contributing factors such as COVID-19 should also be considered.
1) TTM decreased.
Participant G: Yes, TTM also decreased significantly. I think it was reduced to a third.
Participant G: As the law on LST decision itself is first explained in the emergency room, once they have decided not to take LST, they do not try TTM at all.
2) The number of potential brain death donors and brain death OTD decreased.
Participant A: (we) did not try to confirm brain death, as I have explained before.
Participant A: (I) think the number of potential organ donors has decreased slightly.
Participant F: As the medical staff focuses on making decisions about life-sustaining care, it does not seem that they provide an option for organ donation. This seems to have brought about the reduction in the cases.