Engaging in patient decision-making in multidisciplinary care for amyotrophic lateral sclerosis: the views of health professionals

Figures & data

Table 1 Professional characteristics of participants

Profession/role	Number
Allied health (social work, physiotherapy, occupational therapy, speech pathology, nutrition)	13
Medicine (neurology, physical and rehabilitation medicine, palliative medicine)	9
Nursing	5
Motor Neuron Disease Association regional advisor	2
Clinical researcher	1
Clinic coordinator	1
Palliative care volunteer	1
Total	32

Table 2 Interview guide

Theme	Question
Participant experience with decision-making	Tell me about your experience in helping patients make decisions about their care. What role do patients have in decision-making? What role do carers play in decision-making? What decisions do people with ALS need to make? What do you see as the treatment options available to patients?
Barriers and facilitators	F1. When has decision-making worked well? F2. What has enabled it to work well? G. What are some of the barriers you have experienced? H. How do patient values influence patient’s decisions? I. What information or support do people with ALS and carers need to make their decisions? J. How does time urgency affect decisionmaking, and the quality of the decision?
Improvements to decision-making processes in multidisciplinary care	K. What would improve decision-making in ALS care?

Abbreviation: ALS, amyotrophic lateral sclerosis.

Table 3 Patient factors

Ability to accept the diagnosis “It seemed to be more often the case in my perception that people were very reluctant to make big decisions, not quite believing that this was the case, or not quite believing that things were going to progress ... It feels like a mixture of hope and disbelief, with disbelief, I think, overwhelming the hope.” (HP15) “It is very challenging when they don’t accept the diagnosis, because if they don’t do that, they don’t accept any interventions. And there comes a point where it’s too late to institute various interventions, which internally may then lead to sort of quite a severe, quite a nasty death on the part of the patients.” (HP29) “I don’t think we actually pinpoint that very clearly ... and because they don’t come across as a dementia patient, fair enough, but they’re not performing normally. So they do have some sort of cognitive impairment which is not enough to be dementia, but they’re not functioning as they used to. And I’m sure that is impacting in some way.” (HP28) “It could be like a lack of initiative to take the decisions. They [patients with cognitive and behavioral changes] will leave for later when usually people say, ‘Look, no, we’re deciding now’. And then sometimes people say ‘We’ll discuss this later’, and later is too late. Important things like palliative care or who is going to take care of them.” (HP30) “You try and talk to them about that and they’re not ready to hear it. They’re not ready to, they don’t want to talk about the long term accommodation option, and then it’s literally a snap decision when they can’t do it anymore. And so all of that pre-planning that you’d like to do is much more difficult, but you don’t want to force them. So we’ll scramble them all ... but it’s not an ideal situation for their care.” (HP4) “It’s about trying to be responsive to them when they are ready to hear, which is the same with any crisis situation. Because it is a crisis, and it feels like a series of crises. Crisis theory is ‘respond at the time, do what you can, calm it down, normalize it, be ready for the next crisis’. And that’s consistently how it feels.” (HP15) Types of information patients sourced 7. “The Internet is so varied, that, we have patients regularly sending in information going, ‘Oh, I’ve found this amazing machine that’s going to solve all my problems’. And having to tell them, ‘I realize you’ve found this and all the things sound really good, like online there’s all these wonderful reviews about this system, but it doesn’t work’.” (HP23) 8. “They often don’t have realistic expectations of how much help the medical profession can provide. They’re wanting cure, but at the same time not necessarily seeing what they’re going to be kept alive to be.” (HP20) Patient-carer relationship 9. “I don’t think you can only talk to the person with the ALS and find out just what they want, because what their carer wants might be totally different ... The client might say ‘I want to stay home, it’s the only thing I want to do’, and the partner might be going ‘There’s no way I can handle, physically, their behaviors’. So you’ve got to take both into consideration.” (HP7) 10. “There’s so much family friction at times. You know where one is guarding the other, and I can think of one particular family where there was quite a number of family players involved, and they all seem to be hyper-protective, and not necessarily making the right decisions, or leaving, sort of leaving the person with ALS to make the decisions, but at the same time being gate-keepers. And you just know you could help this person more, but you can’t get there.” (HP21)

Abbreviation: ALS, amyotrophic lateral sclerosis; HP, health professional.

Table 4 Health system factors

Timing of diagnosis and symptom management 11. “I think it all goes back to the clinical acumen of the first few people that they see, and the more they know about the disease. If you’re not thinking about it, you’re never going to diagnose it. So, the more they know, then the better they’re going to get, to pick it up sooner. Sometimes you can hardly blame them, because the symptom has been so subtle, that I can see why the GP was hunting other causes, there are much more common things that could have mimicked that subtle symptom.” (HP26) 12. “I think that is an obstacle to timely management of patients ... my waiting list is 18 months. Now, somebody with a possible diagnosis of ALS will bypass that, be seen urgently. But even so, it’s not as though I can see them tomorrow. It’s still going to be several weeks.” (HP18) 13. “There are massive waiting lists if you were to go and see a gastroenterologist in the public system. So three months time, when you need it now, is a bit too long to wait for these patients.” (HP24) 14. “It adds a real stress when people are clearly progressing, but then you’re waiting for something to happen. And in the meantime, they’re struggling until that happens. And by the time that thing happens, the thing you’ve requested is out of date. So then you’re asking for something else. So you’re always playing catch up.” (HP27) 15. “I think that’s with feeding and ventilation, as well ... you have to raise it very early. And they have, they’re big decisions to make. And, not going ahead with it has very significant consequences. So in the discussion you have to say if you don’t do this, these are the dreadful things that are going to happen to you, and if you do do it, these are the dreadful things that are going to happen to you.” (HP3) 16. “The information is important, but the time that you give the information will be also important, because you might give too early, and they forget or don’t hear what you said. And we have then people coming who say, ‘But I wasn’t told that.’ It was clearly written that we informed people at certain stages, but they just don’t remember, because I don’t think they were ready to hear.” (HP28) 17. “I try to pace myself, not to give them all the information from the beginning of the disease until the end of life, right in the first session. They won’t remember it; it’s going to be overwhelming, I’m not sure if they would want to come back to the clinic again either.” (HP26) Access to ALS-specific resources 18. “There are massive barriers by the health system ... We know that managing patients in a multidisciplinary clinic is far better than in a general neurology clinic. They live longer, and more importantly their quality of life is better. None of those things are funded. And that presents an enormous problem for us. As a result, you can’t provide dedicated services, you can’t institute things on time, and it’s a huge issue.” (HP29) 19. “I would love there to be a set guideline ... but we’re not funded for that clinic [for] our positions. So I need to be very careful about how much work I put into it. And that’s probably why I haven’t. There’s a lot of ideas I have about formalizing these things, but we’re just not funded.” (HP22) Interprofessional communication 20. “I think often the structure of the clinic makes that difficult because Dr X saw her first, documented in the notes, which is great, but it really would have been nice to talk to Dr X verbally, before [the patient] came into our rooms. Sometimes it can be quite difficult. Sometimes the neurologist might write ‘Not for PEG’ in big writing, but they don’t say why.” (HP22) 21. “I find a lot of my work is afterwards, following up, referring. And because these patients come from all over, trying to track down which community dietitian services this area, it’s like going through the path of calling this hospital, then they say no, you need to call this community dietitian, this community dietitian says, ‘No, I don’t see patients with tubes’ or ‘I only see patients who are immobile, and try this person’.” (HP24) 22. “But suddenly they came across Dr Y and Dr Y came across them and they said ‘What are you doing? We do this already.’ And so, I guess another barrier is communication, and making sure the entire medical, any health profession is aware of what’s available where. And that’s not very well done.” (HP18)

Abbreviation: ALS, amyotrophic lateral sclerosis; HP, health professional.

Table 5 Decision-making facilitators

23. “I think what we have to be able to do is be very ready with information, be very responsive to anything ... it’s about trying to be responsive to them when they are ready to hear. So I think having good information to hand, being as responsive as you can.” (HP15) 24. “I think good decision-making too also comes from being given really good information ... and multidisciplinary stuff, and everyone singing from the same page.” (HP12) 25. “I think if we had more evidence for everything we do it would make life much easier, because we could say, ‘When you get to this point in your disease, you should do this’. Locally, specific to here, a clear pathway of care, and a policy and procedure would really help in terms of just not like collating the evidence and getting agreement on that, but also like literally step by step in our clinic, based on the barriers within the clinic.” (HP22) 26. “... I’m suggesting [a] bucket of money, resource, some other philosophy whereby people are dedicated to being reactive to, or even predictive of [patients’] changes, so as things are starting to change or develop, the other [service] changes and developments can be put in place.” (HP27)

Abbreviation: HP, health professional.