头颈肿瘤修复重建术中临时性气管造口的患者体验研究

修复重建在口腔颌面肿瘤患者的治疗中占有重要地位，由于口腔颌面部位于呼吸道开端，而呼吸梗阻可能危及患者生命，是口腔颌面外科最严重的术后并发症之一，为了避免术后出现这种紧急情况，气管切开/临时性气管造口常常是无法避免的。

既往关于临时性气管造口的研究往往是从医生或者护理的角度出发，罕见从患者体验角度进行的研究。

Rogers等[1]的这篇文章便对临时性气管造口在头颈肿瘤修复重建患者中的体验进行了研究。研究设计很简单，研究结论几乎也是意料之中的，难得的是我们可以通过这篇文章窥见一丝患者对临时性气管造口的体验，毕竟做气管切开的颌面外科医生可能99.9%以上都没有挨过气切的刀。

手术中做不做临时气管切开，每个医院乃至每个医生有不同的意见，但是我觉得除了和医生的手术修复技巧以及患者客观情况有关以外，很多时候和外科医生最重要的能力——判断力——也是很有关系的，而根据临床信息做出准确判断然后进行精细准确地执行需要的操作并不断提高，是外科医生医生需要修习一生的基本能力。

回到这篇文章中，患者对于临时性气管造口体验的反馈的主要包括：恐惧感、交流障碍、窒息感、不适感、社交孤立。

第一个表格是制作问卷前患者的访谈反馈：

Patient	Comment
1	I found I was always in fear of choking and so found sleep very hard and uncomfortable.
2	Main problems were with the physical issues, specifically uncomfortable, but I knew it was necessary. Removal of the tracheostomy tube was easy and a relief.
3	Frightening, terrifying, very stressful, caused quite a lot of pain, tried to remove it but had to leave it, was on oxygen overnight, not being able to breathe, sucking out debris bothered me, still very sore, wanted to ask but was frightened.
4	I know what I was getting myself into but when I woke it was like leading into a black tunnel and then horrific pain to which very much to my surprise someone was there to relieve it. I thought that hygiene was first and foremost and also I was still in agony when awake.
5	I had major surgery twice. This has left me with facial and neck scars plus a large and very deep tracheostomy scar. As a young person this has been and still is very hard to live with, People look and make comments. Once I woke with the tracheostomy tube I was worried it would block. It is only now that the scars are so awful and what the public do and say that bother me.
6	Waking up with one fitted was a terrifying experience, the noise, and the feeling of not being able to get my breath is something I still don’t like thinking about. Whilst I was told before the operation I would have one fitted, I was not prepared for the reality of it. Did not understand what was happening. I didn’t cope well with it at all whilst I was on the ward.
7	I was aware I was going to regain consciousness with a tracheostomy but was not greatly worried about it. My major concern was the surgery on my tongue which was the focus of cure. The reality was that the tracheostomy was the worst thing of all of the invasive procedures carried out on me. On waking there was mild coughing and eventually this stopped and I learnt to breathe from the top of my lungs by inter-costal movements rather than diaphragmatic breathing. I was consciously aware of dirty, cold dry air entering my lungs. Healing was very slow taking six weeks to heal with dressing changes during the day which I was able to do, this impaired my speech as I had to learn to structure sentences, change breathing patterns and spoke much like a darlek. As the tracheostomy closed I then had to relearn sentence structure, word flow and emphasis and still tripped myself up with speech.
8	Immediately coming around from operation quite relaxed due to drugs. Later on the mucus building up on the chest, couldn’t breathe, felt like drowning, induced panic. Lying down immobilised does not help this, very drowsy initially now social problems. On the ward there was a sense of drowning and panicking, feeling continued throughout time of having the tracheostomy in. The most distressing part of the whole operation was the tracheostomy, horrible sensation that seemed to add to the trauma of the whole experience. I had my tube in for four to five days.
9	I had prepared myself with pen and paper to communicate. I was OK with it emotionally but my friends were very shocked and upset as they were not prepared for the visual reality by the ward staff. I was frustrated not being able to speak until the tube was changed to a variety where speech was possible. I was nervous about catching it on something and the thing coming out with my movements so they were very tentative. Information about how it might feel immediately post op and a more accurate expectation about the length of time would have helped. Perhaps viewing some photographs pre-op and explaining about the different types of tubes and how they affect speech would help.
10	Waking with the tracheostomy I was surprised and it hit me emotionally as I don’t think I was told previously. I couldn’t speak, I found it difficult attracting attention. Much later shown how to use it, felt easier and more in control. After struggling for some time with communication with a pen and pad, told to stop the opening to be able to speak. My five year old daughter didn’t recognise me until I was able to speak. Removing the tracheostomy was a very happy day. The most difficult was the feeling of choking, the inability to get urgent attention to suck clean the tube, otherwise the communications issues were secondary.
11	Horrendous. I used to be a nurse with children and you don’t realise what it is like. I would sooner be dead than go through it again. It is a horrible, fearful, horrendous feeling especially when coughing and sucking down the tracheostomy. It was difficult to get a comfortable position getting the oxygen, alright when removed, over quite quickly. You don’t know what it is like unless you have had it done. The feeling of sucking out was awful.
12	It felt funny and strange, so so scary. I knew it was going to be there, if I hadn’t known it may have been very different and even more frightening. Because I knew it was going to be there it was not so frightening. It was impossible to speak and had to write everything down. I felt very lonely, felt left out because I could not form a conversation. When you are a patient you chat to one another. Once removed I didn’t stop talking. It has healed healthily and feels alright.
13	The enormous vulnerability especially when the nursing staff were making decisions for me and I couldn’t control them, eg asking questions I couldn’t answer, choice, not understanding. I need to communicate by writing at least. Powerless not able to negotiate. Inability to be understood.
14	Not being able to communicate. Impacted on me socially, can’t interact the same, tracheostomy in four days, beforehand you didn’t realise how emotional it was. The big thing was when I woke up. They tell you about it but not how bad it is. They say that you get used to it but I don’t think you do. The thought of having another one I would sooner go. I wouldn’t do it again, not sure what the alternative would be apart from death.
15	My only response “horrible”.

中文翻译版（by Chatgpt）：

1. 我发现我总是害怕窒息，所以很难入睡，也感到非常不舒服。
2. 主要问题出在身体上，特别是感到不舒服，但我知道这是必要的。拆除气管切开管很容易，也让我松了一口气。
3. 非常恐怖、可怕，非常有压力，有很多疼痛，试图把它拿掉，但不得不留下它，在晚上需要吸氧，无法呼吸，吸出垃圾令我困扰，仍然很疼痛，想问但又害怕。
4. 我知道自己会进入一段艰难的过程，但当我醒来时，感觉就像是进入了一个黑暗的隧道，然后是极其剧痛，令我非常惊讶的是有人在那里为我缓解痛苦。我认为卫生是最重要的，当清醒时我仍然非常痛苦。
5. 我做过两次大手术。这给我留下了面部和颈部的疤痕，以及一个大而很深的气管切开疤痕。作为一个年轻人，这对我来说一直非常难以接受。人们会看着我并发表评论。一次在醒来时，我担心气管切开管会被堵塞。直到现在，这些疤痕变得如此可怕，以及公众的言行举止才困扰着我。
6. 醒来时安装了一个气管切开管是一次可怕的经历，噪音和无法呼吸的感觉至今我都不太愿意想起。虽然在手术之前我被告知会安装一个气管切开管，但我没有准备好应对现实。我无法理解正在发生的事情。在病房里，我完全无法应对。
7. 我知道我将在有气管切开的状态下恢复意识，但并不十分担心。我最关心的是我的舌头手术，这是治疗的重点。事实证明，气管切开是我所经历的所有侵入性程序中最糟糕的事情。醒来时有轻微的咳嗽，最终停止了，我学会了通过肋间运动而不是隔膜呼吸来吸气。
8. 当即从手术中醒来时，由于药物的作用，感觉非常轻松。但后来胸部开始积聚黏液，无法呼吸，感觉像是被淹没，引发了恐慌。躺下并不能帮助缓解这种情况，最初感到非常昏昏欲睡，现在则有社交问题。在病房里一直有窒息和恐慌的感觉，直到在患有气管切开的期间这种感觉持续存在。整个手术过程中最令人痛苦的部分是气管切开术，这种可怕的感觉似乎增加了整个经历的创伤。我使用气管切开管约持续了四到五天。
9. 我事先准备了纸笔来进行交流。情绪上来说，我对此感到可以接受，但我的朋友们非常震惊和难过，因为他们没有得到病房工作人员给出的直观预期。在气管切开管被更换为可以说话的类型之前，我无法说话，这让我感到沮丧。我担心自己会不小心碰到它，或者在运动中会被拽出来，所以行动非常谨慎。提前了解手术后可能出现的感觉以及对持续时间的更准确的期望会有所帮助。也许在手术前观看一些照片，并解释不同类型的管道及其对说话的影响，会有所帮助。
10. 醒来后带着气管切开管，这让我感到惊讶，情绪上受到了冲击，因为我觉得之前并没有被告知。我无法说话，很难引起别人的注意。后来有人教我如何使用它，感觉更轻松，也更有控制感。在用笔和便签进行交流艰难的一段时间之后，被告知关闭气管切开管的开口以便说话。直到我能够说话，我的五岁女儿才认出了我。取出气管切开管是一个非常快乐的日子。最困难的是感到窒息的感觉，无法立即获得紧急帮助来吸出管道中的清洁物，其他交流问题相比之下次要一些。
11. 可怕。我以前是一个照顾孩子的护士，你不会意识到那是怎样的。我宁愿死去也不愿再经历一次。那是一种可怕、恐惧、令人发指的感觉，特别是在咳嗽和吸气时感受到气管切开管。很难找到一个舒适的姿势来获取氧气，在移除时感觉还可以，速度相当快。除非你亲身经历过，否则你不会知道那是怎样的。吸出的感觉很可怕。
12. 感觉有点奇怪和奇异，非常可怕。我知道它会在那里，如果我不知道的话，可能会很不同，甚至更加可怕。因为我知道它会在那里，所以不那么可怕。我无法说话，必须把一切都写下来。我感到非常孤独，因为我不能进行交谈，感觉被排除在外。当你是一个患者时，你会相互交谈。一旦移除，我就没停过说话。它已经完全康复，感觉还好。
13. 特别是当护理人员为我做决定而我无法控制时，我感到非常脆弱，比如提出我无法回答的问题，选择，不理解。我至少需要通过写作来交流。无能为力，无法进行协商。无法被理解。
14. 无法交流。对我的社交生活产生了影响，无法以相同的方式互动，气管切开管使用了四天，在此之前你没有意识到它是多么具有情感上的负担。最重要的是当我醒来时。他们告诉你会有，但没有告诉你有多糟糕。他们说你会适应的，但我不认为你会。想到再做一次，我宁愿死去。我不会再做了，除了死亡，我不确定还有什么其他选择。
15. 我唯一的回应是“可怕”。

第二个表格是患者对于问卷最后的开放性问题的反馈摘录：

开放性问题反馈结果
1 st time scared when suctioning (fear of unknown) next couple got easier.
Blocked once but was attended to very quickly. It was a very unpleasant feeling.
Can’t remember how many days trachy was in, I am guessing 3 weeks. Apparently I ripped mine out after operation. I don’t really think it was that bad after I was in main ward. Changing it was horrific. I was petrified, felt I could not breathe. Taking it out was easier than I expected and was quick.
Despite the discomfort mainly due to very tight stitches, I realised the procedure was inherent in my recovery so tried to work with it. Once tapes had replaced the sutures it was completely comfortable apart from when I had to use the suction pipe. Healing was prompt apart from site of stitches which cause sores on the thin skinned area on my collar bone, and these were worsened during radiotherapy. Overall I think that had the trachy not been so tightly secured the whole episode would have been made more comfortable.
I did not actually have to manage the trachy myself apart from not getting it wet. I had worries about my own suctioning while in hospital. I would have felt better as the worse feeling was choking and panic! Felt awful if had to call for nurses to do the suction more than once a night.
Healing took much longer than I anticipated. Good care was given by the community nurse in dressings.
I believe I pulled the tracheostomy out and didn’t need it again!
I found the frame very tight and the removal of the frame was very painful and would benefit from some kind of pain relief.
I had a horrific experience one night, when my trachy got blocked up and I could not breath, I had to throw a bottle at the door to get attention from someone to help me!
I have had the trachy twice now on 2 major operations. I have to say it was the worst part and it frightened the life out of me. Suction blocking is the worst part. Also the built in heater was so uncomfortable. I think this survey is such a good idea. Thank you for doing this.
I only had a trachy in place for a few hours as I vomited and it dislodged and had it removed whilst in ITU.
I was not aware of some of the side effects which resulted from having a tracheostomy, therefore I did not cope too well. Suctioning and lack of speech were not explained to me. However I coped and soon learned the hard way, by experiencing these problems.
It has been 22 months since this procedure but can honestly say I had no fear or side or ill effects.
It is a necessary evil, you have to endure to get to a better place but boy it feels so good when it is taken out, the feeling of complete euphoria.
Less than was expected. People that have had a trachy previously say to me that I can’t believe I have had one – hardly any scar mark.
I did not enjoy the experience.
Nursing staff need to be more aware of the psychological impact that inability to communicate can have on a patient.
On leaving hospital nurses had difficulty dressing the wound mainly due to not having correct dressing or expertise.
It was very noisy which made sleep difficult. I was very apprehensive when time came to remove trachy. There was social isolation because of unable to speak. The discomfort was due to lot of mucus production, the yanker sucker was my best friend. The trachy is not a pleasant experience and knowledge of how it will be will not make it any easier for me – my apprehension will still run riot.
The first time I had the trachy removed it was stuck and the doctor who removed it was very forceful removing it – maybe could have used a lubricant to make it easier to remove. It was a very frightening experience.
There were 2 things that I found particularly distressing – not being able to communicate with healthcare professionals particularly in the first days after the operation. I felt incredibly vulnerable and frightened. I could not communicate my concerns. Secondly the tube getting blocked with secretions. It was a miserable experience especially at night time. When I tried to alert night staff on three occasions I was told that there was nothing wrong with me, when I believed I was choking to death. They would not allow me to write my concerns so that I could write my concerns. I eventually asked a nurse to show me how to use the suction pipe so I could relieve the problem myself. I had nightmares for months afterwards.
There were times when I needed suction, then it was difficult and frightening and I felt I could not breathe.
They took tracheostomy out after 5 days but oxygen levels were down and they tried to put it back in twice but could not. Not very pleasant. I was on oxygen for a day and left 2 days later. All goes well.
Trachy scar could have been neater.
Was glad to have it removed to speak.
When the device was removed, the scar did not heal well, I had to have the wound cauterised.

中文翻译版（by Chatgpt）：

1. 第一次进行吸引时感到害怕（对未知的恐惧），后面几次变得更容易了。
2. 有一次堵塞了，但很快得到了处理。那是一种非常不愉快的感觉。
3. 我记不清气管切开管在身体里停留了多少天，我猜大约三个星期。显然，手术后我把它拔了出来。我真的觉得在主要病房里之后并不那么糟糕。更换气管切开管的时候很可怕。我感到恐惧，觉得无法呼吸。把它拔出来比我预期的要容易，而且速度很快。
4. 尽管由于非常紧的缝线而引起的不适，我意识到这个程序是恢复过程中固有的一部分，所以努力适应它。一旦用胶布代替了缝线，除了使用吸引管时受到一些不适外，我感觉完全舒适。伤口愈合得很快，除了缝线部位会在我的锁骨上那个薄皮肤区域导致溃疡，这在放疗期间变得更糟。总的来说，我认为如果气管切开管没有被固定得那么紧，整个过程会更加舒适一些。
5. 实际上，我并不需要亲自管理气管切开管，除了不能让它湿润。在医院里，我对自己进行吸引感到担心。如果我不得不在一晚上多次呼叫护士进行吸引，那种窒息和恐慌的感觉会让我感到非常糟糕。
6. 愈合的时间比我预期的要长。社区护士在换药方面给予了良好的护理。
7. 我相信我把气管切开管拔出来了，之后就不再需要了！
8. 我觉得固定架非常紧，取下固定架非常痛苦，需要一些疼痛缓解的方法。
9. 有一天晚上，我经历了可怕的经历，我的气管切开管堵塞了，我无法呼吸，我不得不将瓶子扔向门，以引起某人的注意来帮助我！
10. 我已经两次接受了气管切开手术，两次都是重大手术。我必须说，那是整个过程中最糟糕的部分，它吓坏了我。堵塞是最糟糕的部分。而且内置的加热器非常不舒服。我认为这个调查主意非常好。谢谢你进行这个调查。
11. 我只在一些小时内留有气管切开管，因为我呕吐了，它松动了，在重症监护室里被取出来了。
12. 我没有意识到一些由气管切开引起的副作用，因此我应对得不太好。没有人向我解释吸引和失去说话能力的情况。然而，我应对了这些问题，并且通过亲身经历了解到了其中的困难。
13. 距离这个手术已经过去了22个月，可以真诚地说我没有恐惧或任何副作用或不适。
14. 这是一种必要的恶，你必须忍受它才能达到更好的状态，但当它被取出时，感觉真的很好，完全的喜悦。
15. 比预期的要少。以前接受过气管切开手术的人对我说，他们简直不敢相信我曾经有过气管切开 – 几乎没有疤痕。
16. 我并不喜欢这个经历。
17. 护理人员需要更加意识到无法交流对患者可能产生的心理影响。
18. 出院时，护士们在换药方面遇到了困难，主要是因为缺乏正确的敷料或专业知识。
19. 这是非常嘈杂的，使得睡眠困难。当到了移除气管切开管的时候，我非常紧张。由于无法说话，导致社交上的孤立感。不适感是由于大量痰液产生，吸痰器成为了我最好的朋友。气管切开并不是一种愉快的经历，对于它的了解并不会让它对我来说更加容易 – 我的紧张情绪仍然会失控。
20. 第一次去掉气管切开管时卡住了，取出它的医生非常用力 – 或许可以使用润滑剂使其更容易拿掉。这是一次非常可怕的经历
21. 有两件事情特别令我痛苦 – 在手术后的前几天无法与医护人员交流。我感到非常脆弱和恐惧。我无法表达自己的担忧。其次，管子被分泌物堵塞。尤其是在晚上，这是一种痛苦的经历。当我试图在三个场合向夜班人员求助时，他们告诉我一切都正常，而我却认为自己快要窒息死亡。他们不允许我写下我的担忧。最终，我请求一位护士教我如何使用吸痰管，以便自己解决问题。之后的几个月，我做了噩梦。
22. 有时候我需要吸痰，但是那时非常困难和令人恐惧，我感觉自己无法呼吸。
23. 他们在5天后取出了气管切开管，但氧气水平下降，他们试图两次重新放入，但未成功。这并不是非常愉快的经历。我接受氧气治疗一天后，两天后离开。一切都进展顺利。
24. 气管切开瘢痕可能会更整洁一些。
25. 很高兴将其取出以恢复说话能力。
26. 当设备被拿出来后，瘢痕没有很好地愈合，我不得不进行烧灼处理。

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参考资料：

1. Rogers SN, Russell L, Lowe D. Patients’ experience of temporary tracheostomy after microvascular reconstruction for cancer of the head and neck. Br J Oral Maxillofac Surg. 2017 Jan;55(1):10-16. doi: 10.1016/j.bjoms.2016 8 06. Epub 2016 Sep 3. PMID: 27596013.