Update on my mental state.
I posted below my writing part of an article from US National Library of Medicine. I underlined the parts that were relevant to me. I found my thoughts covered there so I guess they were 'normal' thoughts. Anyways. I have always looked a this journey with ALS with the idea I would accept the feeding tube but not the Ventilator. But I always viewed the placement of the feeding tube as a step very close to the end. So that bummed me out, bad. Then there was pain, very bad pain the first night and when you add that into my mood already, it took me around the bend. And the fact I can't speak anymore is another sign the end is coming (in my mind). So I wasn't a very happy camper. But some good friends out there reached out and tried to cheer me up and by nature, I am an optimist. So day two was better. Taking 800mgs of Ibuprofen at the right time was godsend in pain relief and by day three, I am 12 hours out from my last dosage and feeling no pain. So other that the dam tube sticking out of my stomach, I feel okay right now.
Results The Enigmatic Character of the Feeding Tube: The Hospital In the hospital where we conducted our research, ALS patients clearly tend to postpone the decision on taking a feeding tube as long as they possibly can; this fact is also reflected in the literature (e.g. Stavroulakis et al. 2013),. The gastroenterologist preferred inserting tubes earlier, when patients were relatively fit and could benefit from the nutrition and not having to spend all day trying ingest food. The gastroenterologist was not sure that the patients fully understood what getting and living with a feeding tube actually entailed, as many of those who opted for late placement died within 3 months of treatment. The concern about postponing tube placement was strengthened by a failed trial in the neurology department (Van der Graaff, in preparation 2014). The researchers wanted to compare two conditions. In the first condition, patients decided when to get a feeding tube; in the second the doctors decided the timing. The trial was never conducted because patients did not want to enrol. The reasons they gave for refusing to participate were mostly along the lines of ‘they were not ready for a feeding tube yet’ and had ‘enough on their plate’. They did not want to run the risk of being assigned to the condition where the doctor would decide. The trial failed, but this failure is significant as it shows the emotional weight patients attach to the placement of the feeding tube, and their reluctance to have it. The decision to take a feeding tube is complex. In our study we systematically mapped these complexities by following the trajectory of patients anticipating a feeding tube, and their life with it after they obtained it, at various points in time. We now show how the identity of the feeding tube changed in the course of patients’ trajectory.
Go to: Characteristics and Appreciations Change Together From Symbol of Deterioration to Eraser of Complaints and Concerns When they receive their diagnosis, the ALS patients has to face a radically new perspective on life and a very concrete view of their impending death. Seeber et al. 2014 show that the diagnosis is a shock from which most patients have to recover before they can reorganize their lives. They usually start at the end: they anticipate how they will die and discuss their wishes for care at the end of life with their GP (ibid). The trajectories are different for different patients, and the feeding tube is one of many issues that they have to come to terms with. When they do not suffer from dysphagia yet and there is no problem with weight loss, the patients in our study had tube feeding on their list as something they might need later. But this ‘later’ was characterized by an image of decline in ways they would rather not think about if they could avoid it. At this point, the feeding tube was a scary symbol of deterioration or even an imagined limit to a life worth living. Patient Piet looks back: You see, that’s another change of horizon. When it all started I said: when I get to the point where I need a [feeding] tube, really, that’s when I don’t want to go on. But then I never wanted to be in a wheelchair. And now I say to my wife: “Come on, give me a push, let’s go out together!” So we’ll have to see… (Seeber, unpublished material) The patients took the progression of their disease one step at a time. What added to the negative identity of the feeding tube was that the patients found the procedure of placing the feeding tube terrible. The literature describes tube placement as a minor surgical procedure (Martin et al. 2012), or a minimally invasive procedure (Hossein et al. 2011 ). This may be true for the doctors, and comparable examples have been reported where physicians downplay the effects of their treatment.3 In our case, however, without exception patients agreed on the gruesomeness of the tube placement procedure. They anticipated the placement fearfully and afterwards reported on the horror of being put in an awkward, powerless physical position, finding it hard to breath and having to swallow the scope, which sometimes caused spasticity and blocked the larynx. The procedure demanded hospitalization, which implied a displacement from where the patients had their support and technological adaptations. The weaker the body, the harder the placement procedure was for them. There was a remarkable consensus among patients in their evaluation of tube placement, with the main variations mentioning just how terrible it had been, even if the doctor thought the procedure had gone smoothly and quickly. Although some patients said that their own opinion was not of primary importance in the decision to get a feeding tube (“I had no choice…”; see also Vesey 2008), for other patients, it was. Typically, these patients’ narratives, like Piet’s quoted above, showed a turning point. The identity of the feeding tube changed. Interviewer: Can you tell me what happened to make you need a feeding tube? Mr Jansen: I have problems swallowing, and I choke. And eating takes a very long time… One month, two months ago, eating dinner took the whole evening. I can’t swallow food. So that’s why, really. […] And then it takes you more than an hour to eat. It takes so much energy. And you leave lots of food on your plate, because you give up trying. So then I lost weight, I was underfed. And I lost more and more weight. So at a certain moment… We have a very good doctor and she wanted to do it [the placement] before she retired. So we had to think about it a lot, before we accepted the feeding tube. Interviewer: What did you have to think about? Mr Jansen: Well, of course, the fact that you have such a thing in your stomach wall! Mrs Jansen: Yes, you considered the down side, eh? But then, this explanation [by the doctor], that was really nice. She told us everything about it. And then we knew it just had to be done. We [the family] decided immediately. But Hans [Jansen] said: I don’t want it. So we took a leaflet home, deliberated, considered. That was Wednesday. And then, the other day, [to husband:] you choked terribly, [to interviewer:] he chokes every day, but this time we thought: “this is the end”. And the boys [sons] were there and we said to Hans: “What do you want? Do you want to choke?” And then he said: “You’ve convinced me.” And he sent an email on Friday, straight away. [to Hans:] And you even looked forward to it! The idea of a feeding tube changed for Mr Jansen when he could see that the tube would not only be awkward and disfigure him, but it would provide things that were of value to him. For him it meant no more choking, no more fear of choking to death, no more struggling to eat, which no longer tasted so good anyway, and no more weight loss. As his wife reported, the prospect of leaving all this behind was something Mr Jansen actually started to look forward to. The feeding tube turned from a symbol of deterioration into a means towards an end: it became an eraser of complaints and concerns. This is an example of how the characteristics of life with a feeding tube and the value of these characteristics intertwine and change together. In every-day life, the feeding tube became a different object. The tube now provides valuable opportunities rather than solutions to problems Jansen did not experience. These possibilities outweighed his primary, self-evident reluctance to ‘have something in your stomach wall’. This was not something he would ever consider for trivial reasons. The extremely scary event of nearly choking to death, however, was the tipping point to realising that a tube could be applied for good reasons. This shift not only relates to a psychological process or change in perceptions, as in response shift, but to a process of shifting physical qualities. When regarding the shift in these terms, the tube is a rational response to a changed situation rather than an inexplicable change in values. It is also possible that only the patient’s opinion changed, even if the situation didn’t. Mrs Geerts explains her husband’s lack of interest in food. Some things take care of themselves, things you can’t do any more, like going out. I remember I couldn’t ride my bike. At a certain point you start hating cycling because it’s so hard to do, you can’t get on or off the bike, you see. So then it’s not a problem that you can’t cycle. It’s like that: things are just not possible at a certain point. Then the need disappears, even if you’ve always liked getting out. We travelled a lot, we were always out and about. You can’t do that any more, and now it would really bother me if I had to pack my suitcase, so to speak. You can compare it to that! This change in preference is often called a ‘response shift’, which is defined as involving ‘changing internal standards, values and the conceptualization of quality of life’ (Sprangers and Schwartz 1999). The phenomenon to be explained is a change in the way people answer questionnaires, or as Eton (2010) says: “[R]esponse shift is […] a theory that helps us understand how certain psycho-social processes can affect how people answer questions on health-status measures (p. 930)”. It is also described as cognitive resonance reduction by psychologists looking for patterns in human behaviour; the same phenomenon (eating, cycling) is judged differently. We did not observe this phenomenon in anticipations about the placement of the feeding tube. Only when the feeding tube could actually solve problems would people change their mind about it. The shift in the situation, to when choking becomes a real concern, makes it understandable why people postpone taking a feeding tube. It is not because they fail to understand how the tube works or value it in strange ways, but because it does not solve real problems in a life already full of difficult medical issues. If a feeding tube only solves problems that might occur at a later stage, people postpone this radical treatment in the hope they will never need it. The time to face it is when dysphagia does become a severe problem. Consequently, these people opted for tube placement very late in their trajectory, which made the procedure harder to bear, while the gains of being tube-fed were less (see below). The Tube as Facilitator of Happy Events and as Transformer of Misery The identity of the feeding tube as eraser of complaints changed again. When people evaluated the feeding tube positively, the tube became either an eraser of complaints and concerns, or a facilitator of happy events. The latter happened when patients discovered that the time formerly spent on eating could now be spent on meaningful things. The patients described various happy events the feeding tube facilitated. Paradoxically, and different from the juxtaposition between the pleasure of eating and the necessity of tube feeding suggested in the medical literature, the tube permitted new ways of enjoying food and eating. Eating and tube feeding are not mutually exclusive, which is a common and sorry misunderstanding. Once the pressure was lifted to obtain enough calories, eating – or rather tasting – could be organized in new, enjoyable ways, albeit in another form. Eating had to be reshaped, and related to food that is not too liquid, or too fragmented, yet tasted good. It did not have to be ‘healthy’ or ‘fresh’ food, which puzzled some patients and their carers. Good taste, swallow-able food and pleasure were what mattered. One patient ate one or two cookies a day for the joy of chewing. Partner: Eating was very difficult, and it took a lot of time. Jenita: I was busy eating the whole day. Partner: And obsessively, eh, because it is also a fight against losing weight. It was really tense. And now, with the feeding tube, she wins lots of time and energy that does not go into eating and worrying about food. She eats soup, custard, whipped cream, all the things she really likes. And it’s no longer the main thing, or a necessity. For Jenita, eating had completely lost its attraction because of the difficulty she had with swallowing. With the feeding tube in place, the calories were taken care of, and Jenita could engage in eating in ways she liked. The substance of the food narrowed the possibilities (not everything can be swallowed easily, and not every taste can be made swallow-able), but within these restrictions she could eat the things she enjoyed in a relaxed way. Eating could become a pleasurable activity rather than a necessity to survive. Mrs Velds: You really like yoghurt, Greek yoghurt. And we put fruit in it, a mashed banana, that’s what we did. Mr Velds: Or a mergpijpje [a meringue coated in marzipan and chocolate] every now and then. Mrs Velds: [laughs] Yes, a mergpijpje, something sweet, he likes that. Its soft. Mr Velds: And yesterday we had chicken tandoori. Mrs Velds: Yes, just for the taste. We mashed it, really crushed it because the bits of it are really hard. But he likes it anyway, so we put a little on his plate with something. Mr Velds: With asparagus, yes. [laughs] Interviewer: Also mashed? Mrs Velds: Yes, yes! […] And now and then an alcohol-free lager, or just a beer. Like yesterday. Mr Velds: Two! [smiles broadly. Mrs Velds and interviewer laugh too] Clearly the couple had great pleasure in helping Mr Velds re-enjoy the taste of food. Disconnected from the need for calories and food intake, they made tasting food ‘choke proof’. One patient we interviewed, who was treated in peripheral clinics rather than an ALS centre, was not informed that she could ‘eat’ in both ways [with or without the tube]. This meant she lost the opportunity to gain pleasurable experiences, as she did not use the tube until she ‘really needed it’ and had to give up eating. Besides the food lovers, there were also patients who had never found eating much fun. To them, the feeding tube meant ‘good riddance’ to an exhausting task. They had ‘never been big eaters’ anyway and could do very well without the hassle of daily meals. They would rather spend their time on other things. Gastroenterologist: The tube does not give quality of life in the sense that it cures a patient, because they cannot be cured. The only quality it gives is that people say that they did not enjoy the social aspects of eating so much, ‘because it takes me hours to eat, my food gets cold’. Well, we give them plate-warmers, we do everything possible to facilitate eating. But at a certain point people say: ‘Oh, I’m so tired of it.’ I had one patient, he was an artist, a painter, who because of his ALS could only draw dots. He’d go to the zoo, and he’d would make dots with his pencil, make drawings just out of dots. And he said to me: “Thanks to the tube I have won so many hours in a day. I have only a couple of hours in the day when I am not too exhausted to draw my dots. Before, I used those hours for eating, and now I don’t have to do that anymore!” The example shows that the feeding tube might allow for positive characteristics that do not in themselves relate to the tube, but are facilitated by it. So when the tube is not a positive characteristic in itself, it is important that patients consider what they could do with the time won by obtaining a tube. The tube became a transformer of misery that swapped one form of unhappiness for another. This happened for people who could not administer their own tube feeding due to lack of muscle power and had no informal carers to do it for them. Particularly when they needed regular feeding (e.g., every two hours), the feeding tube could be a major source of misery or loss of goodness.