Illustrative quotes by theme
| Subthemes | Quotations |
| Aligning with patient preferences | |
| Avoiding unwanted care | ‘I think it’s definitely quite valuable in knowing at what point they want you to pull back on certain treatments’. (Respiratory medicine resident) |
| ‘You’d like to know what their advance wishes were. And, for example, maybe they were intubated in the last couple of months and they’d documented they don’t want to do that again’. (General medicine registrar) | |
| ‘Obviously, we can make decisions based on the clinical picture and that’s reasonable, but to be sure that you’re making the right decision for that particular patient, you absolutely need to know about the patient’. (Palliative care consultant) | |
| Prioritising autonomy | ‘If his advance care directive said, don’t touch me, then, I mean, he’s made that decision with his own hand and we would have to respect that, even if we don’t agree with it from a physiological basis’. (General medicine registrar) |
| ‘As long as the patient is competent, I’d say it’s the patient’s right. We’ll respect their choice to die’. (Cardiology resident) | |
| ‘Who are we to say—who is anyone to say they know better than the patient what they want?’ (Nephrology consultant) | |
| ‘If I was advising him while he was conscious, I might debate (the ACD) with him. But unless I’ve got evidence that he is incompetent mentally, I can’t debate that with him while he’s unconscious. I would think it was a great shame, it’s the sort of thing an 85-year-old might do, but it’s something which presumably has been considered well and documented so I’m not the person to turn around and say, nuts to you I’m going to resuscitate you. It might be unexpected, but certainly makes it very clear’. (Gastroenterology consultant) | |
| ‘The difficulty we’re facing is exactly the problem of our mind, that he’s got an excellent prognosis and he will do well if we resuscitate him. On the other hand, he’s clearly instructed me not to do it. So, in that setting, I should not do it … I think he’s making a dumb decision, but in the sense, he’s morally tied my hands’. (Geriatric medicine consultant) | |
| Anticipating family opposition | ‘Sometimes you persist with things a little longer than is appropriate, because you’re trying to keep the patient alive so the relatives can see what is going on’. (Gastroenterology consultant) |
| ‘Sometimes people will end up doing the CPR because they really think the family are wanting it, or the patient’s wanting it, and because they’ve been wanting it no one’s said not to do it’. (Nephrology consultant) | |
| ‘I could get you guys to help me with an advance care directive and say that I, at the age of 30, have no interest in being resuscitated, because at whatever point that my cardiac output stops and I am in an arrest situation, then I don’t want to be resuscitated because that means something horrible’s going on, and I have the right to make the decision and my family don’t necessarily play a part in that’. (General medicine registrar) | |
| Advocating best interests | |
| Defining futile care | ‘The question would be, first, is it a futile treatment, and so the decision has to be made about whether we’re offering the treatment before he has a chance to accept or decline it’. (Palliative care consultant) |
| ‘That’s when I would say, unfortunately, resources are limited, it is a medical decision, in the Australian healthcare system we don’t offer futile treatment. So if we think medically we can’t help this patient, then we won’t offer unnecessary and potentially harmful treatment. So in those situations I’ll also emphasise that these treatments are not without risk and harm and say that, you know, we do what’s in the best interests of the patient, keeping them comfortable, we’re focusing on quality not quantity of life’. (General medicine registrar) | |
| ‘If treatment’s futile, then that trumps an advance care plan. You can’t say that you want treatment that isn’t medically indicated or is futile. The patient can’t write—I want this and this done—in an advance care plan and it has to be done … That would be absurd. Medical futility obviously has to trump the desire of a patient to have a particular treatment’. (Nephrology consultant) | |
| Relying on clinical judgement | ‘If my judgement at the time is that this is going to be reversible, I would be inclined to not follow the plan and have a go at trying to reverse the ventricular fibrillation’. (Nephrology consultant) |
| ‘Being a doctor, your first rule would be to do no harm, and if I do believe that, in this case, it would be beneficial to the patient and, at the same time, there is a good chance he would be able to recover to the point of being able to live life as per his wishes, with significant independence and quality of life, then I don’t think I’m doing anything wrong, in this case … I think it’s not right to withhold treatment—especially when, based on your medical assessment, there is a great potential for reversibility. And the patient might not have that information. They are not expected to make that call. And you, as the doctor, should be’. (Nephrology consultant) | |
| ‘He has an excellent prognosis and you would reasonably anticipate that he would have potentially quite a number of years because basically he’s got nothing wrong with him. So you would be mischievous not to treat him’. (Geriatric medicine consultant) | |
| ‘It’s very tricky, because sometimes you do have people who say they don’t want to be resuscitated for a reversible condition, but, you know, patient autonomy is important … So this would be things the consultant would consider: autonomy versus, you know, reversing a reversible condition that will cost this patient their life otherwise’. (General medicine registrar) | |
| Rejecting unreasonable decisions | ‘We are advocates for the patient, but at the same time, we advocate for treatment that we think is reasonable, within reasonable limits’. (Cardiology registrar) |
| ‘In that situation, I would want more information, and for things to be clarified as to exactly what context he was referring to and things like that. I think you would need to know more information given that he’s 65 and otherwise well. That plan is not really in fitting with normal people’s wishes’. (Geriatric medicine resident) | |
| ‘It’s not that I’m saying that I normally disregard advance care plans, but this is an unusual advance care plan. You don’t have too much time to think about it. The details you’ve given me are really sketchy. Most of the time, when people make advance care plans about things they don’t want, it’s in pretty clear understandable reasons why probably a sensible person would not want that. You know, situations that are clearly untreatable. Situations where treatment is expected to give a bad outcome … Most people in this situation would want to be treated. So, it just feels a bit odd and you’ve got to make a quick decision’. (Nephrology consultant) | |
| Disregarding legal consequences | ‘(Interviewer: do any legal obligations come into it, at any stage?) No, I think it’s more—someone dying who doesn’t necessarily need to die. Like, for me, it’s not necessarily my legal ramifications as doing what’s best for the patient’. (Cardiology resident) |
| ‘I think more the ethical side of things is a bigger play of things in my decision making than the legality of an advance care plan’. (Cardiology resident) | |
| ‘I don’t think I could be prosecuted for following or not following an advance care directive if I was using reasonable judgement, and that the interests of the patient are always at the forefront of everything I do, and so long as I can justify that in a way that my peers would agree with me, then I think I would be fairly safe from a legal perspective, and it’s certainly, fortunately, in this country, not at the forefront of my mind, ever’. (General medicine registrar) | |
| Establishing validity | |
| Doubting rigour of the decision-making process | ‘I guess with any documentation, you’re presuming it was done under the right circumstances, without coercion and all of that … We can never verify that unless we were part of the process’. (Gastroenterology consultant) |
| ‘With an advance care plan, we’re making the assumption that everything’s been—the patient’s had these discussions in a very formal way, things explained, they understand, and things have been discussed. Which may or may not be the case’. (Respiratory medicine resident) | |
| ‘I know in some facilities, like some nursing homes, for example, they fill it in as their KPI … And it might be somebody who doesn’t know the hospital system, or the healthcare system very well, like the nurse around, or the family member who’s left to fill it in themselves, they might just write random things they don’t really mean’. (Palliative care, general medicine and medical oncology consultant) | |
| Questioning patients’ ability to understand treatment decisions | ‘You want what you want, but sometimes you don’t understand—and I know that sounds quite condescending—people don’t sometimes understand their conditions, and maybe that’s a fault of clinicians, we don’t explain what COPD means, what going on home oxygen means. People think that with home oxygen, they’re going to be better and things are going to be better, but, no, it’s one step closer towards the end. And sometimes we’re really bad at explaining that’. (General medicine and palliative care registrar) |
| ‘I don’t think patients necessarily understand what’s going on, and I think—in as much an advance care plan is great, each situation is different. Some people say, I don’t want to be resuscitated, I don’t want to be brought back, because often they think their quality of life is going to be poor. But, in some cases, things might not be as bad as they seem. We never know, so, I don’t think they should be 100% binding’. (General medicine and palliative care registrar) | |
| ‘It’s also useful to say, ‘I don’t want to be intubated’, but it’s kind of a harder one for some patients, who haven’t had much experience with hospitals, who haven’t had medical training, to kind of understand that. So, I think, it’s probably, more for a patient-centred approach, ‘I want a quality of life’ or ‘I don’t want to be in a nursing home’, because they can definitely understand that … If they happen to be a nurse or a doctor, then that’s fine. If they haven’t had much medical experience or medical training, you’d want to know, well, what is it about intubation you don’t like? Or, what have you heard? Their understanding of intubation might be very different to my understanding of intubation’. (Infectious disease and general medicine consultant) | |
| Distrusting outdated preferences | ‘The advance care plan that was made 5 years ago could potentially be outdated, especially with the potentially new diagnoses of metastatic pancreatic cancer and end-stage kidney disease, that could very well change the patient’s perspective about what he wants to do about limitations of treatment’. (Nephrology consultant) |
| ‘I mean, essentially, if the care plan was there, I would—I guess feel obliged to follow it. But my concern with the advance care plans is the timing that they’re made, people—moods change, life changes all the time, advance care plans are rarely revisited to make sure that people still have the same opinion’. (Nephrology consultant) | |
| ‘If they’re conservative to start with, then I don’t think they necessarily have to be updated. And that includes values. So if they’re saying that fit and independent is how I want to be, then nothing changes. I think, if you’ve got someone asking for full resus who then develops metastatic pancreatic (cancer), so a new, significant comorbidity, then I think you should update it, to be less aggressive, if that’s what you want’. (Palliative care consultant) | |
| Seeking confirmation | ‘I guess I don’t really know the circumstances in which he said that. Maybe he was thinking about when he was an 80-year-old man with metastatic malignancy, or something like that. It doesn’t really make sense to me if you’re 65, you’re young, you’re playing golf, everything’s fine, to say ‘I don’t want to have resuscitation’. So, if someone really, really means it, then his family or spouse or whatever will know all about it and they’ll be able to confirm it’. (Palliative care consultant) |
| ‘If it was like, he’d just said this yesterday during his admission, then it would be enough. And OK, stop. And if he’s of sound mind, and he made that decision in the knowledge that he was going to die. But if, if there was any question about when it was made, or why it was made, then I would want to try and clarify’. (Infectious disease and general medicine consultant) | |
| ‘If I was confident about the advance care plan, if my team was involved in it, then I’d respect it, regardless. But if there was a question then I’d have to try and revisit, have a family meeting, try and work out exactly what the situation is’. (Infectious disease and general medicine consultant) | |
| Translating written preferences into practice | |
| Contextualising patient preferences | ‘There’s a generalness about (advance care directives), often, and all of a sudden, you’re dealing with a specific. So you’ve got a general statement about what you want or don’t want to do in a very specific situation, where you’ve got to make a decision in a hurry’. (Nephrology consultant) |
| ‘You need to have a bit of clinical judgement, in terms of interpreting, because obviously, when the advance care plan was made, as much as they try to cover all potential clinical scenarios, it is quite impossible to cover every clinical scenario, so I think, exercise judgement as to whether this will be the situation where values might be important to help to guide you. Whether those values are achievable, or not, would help you plan your treatment’. (Nephrology consultant) | |
| ‘The difficulty with the specific statement is, with a patient with multiple problems, but is stable at the time of your seeing them, you don’t know what specific scenario you’re thinking about. Like, you know, what if you had a stroke? What if you had an AMI? What if you had an arrhythmia? What if you aspirated? What if you fell over and broke your hip? What if you were in a car accident? What if you had anaphylaxis? Do you want an antibiotic? You know, very different scenarios in some situations’. (Nephrology consultant) | |
| ‘Values statements let me do the medical stuff in the context of what they want. The problem with them saying, yes, I want haemodialysis and I want this and I want that is that we may be talking about a different situation. So it might be completely irrelevant. Whereas a values statement might be a lot more relevant for a lot more conditions’. (Palliative care consultant) | |
| Applying subjective terminology | ‘He said his independence is really important for him—that’s kind of a one-sentence thing, so I don’t really know what his independence means in this context’. (Palliative care consultant) |
| ‘When they say they don’t want to be resuscitated, what exactly do they mean. Do they not want (non-invasive ventilation), do they not want ICU, do they not want shocks?’ (Nephrology consultant) | |
| ‘Some just say, ‘I don’t want to live if I can’t play golf’, then obviously it’s a bit tricky to work out which interventions might end up giving him the opportunity to play golf again. Whereas if it clearly states, ‘I don’t want to be intubated’, then your decision’s already made. So yeah, I guess that answers the previous question, it’s more helpful to have more specific treatments and interventions outlined, I would feel’. (Geriatric medicine resident) | |
| ‘Does it need to be interpreted literally? Well, as best one can. At the end of the day, people write funny things, and sometimes we’re not quite clear what they want, so you’ve sort of got to give it your best shot. Or they tell you things that appear to be contradictory, and then you’re struggling, so we run into a bit of that’. (Geriatric medicine consultant) | |
| Prioritising emergency medical treatment | ‘You can always get that information available to you as quickly as possible, and you certainly don’t want to do it the wrong way around and say he might not want this and he does, and he did want that, and so yeah, I’d just treat it as a full code at this point’. (General medicine registrar) |
| ‘Mostly, we are trained to resuscitate, I think we struggle to let people die. But reading this scenario, and not being actually in the scenario, it’s different when you’re physically there, with all the stressors, and it’s all noisy and everything … It’s hard. It’s hard in this case … We probably would resus in ICU. Probably, because we have the support—and I know it’s not necessarily the right thing to do by the patient, but I actually think that would happen’. (Cardiology resident) | |
| ‘In my experience, a 65-year-old with hypertension comes in and codes … They’d be in ICU and tubed before anyone looks at their scanned medical record to see what their advance care plan was’. (General medicine registrar) | |
ACD, advance care directive; AMI, acute myocardial infarction; COPD, chronic obstructive pulmonary disease; CPR, cardiopulmonary resuscitation; ICU, intensive care unit; KPI, key performance indicator; resus, resuscitation.