Table 4:
Phase of the decision | Theme | No. (%) of participants* | Sample quote | TDF domain |
---|---|---|---|---|
Before or background | Most of my critical care physician colleagues generally follow a similar approach to making decisions about the WLST (n = 19)/there are outliers at my centre (n = 4) | 19 (95.0) | “I will say that we are a team of 12 critical care physicians and I will say that in general because it’s difficult to say, it is different for everybody, but in general we all agree. I think we all have the same type of practice. Clearly with some difference and I will say maybe 1 or 2 colleagues, they can be a bit different, but even if we have a different type of practice, in general, we arrive to the same conclusion.” Participant no. B01 | Social, professional role and identity |
The legislation and culture of our patients in our province affect how decisions are made about WLST | 9 (45.0) | “I think if severe TBI goes down the line of brain death, then I think it is the only form, yes. Because yeah, I think that becomes the only form. However, I think just given current legal precedent, I’m certainly cautious around that because it would be tough to withdraw therapy without consent from a family.” Participant no. C05 | Environment, context and resources | |
Aspects of my work structure influence the decision-making process for WLST: | 7 (35.0) | Q: “What aspects of your work environment influence you in your decision to withdraw life-sustaining therapies in patients with severe TBI?” A: “I think it’s, like I said, a continuity of the same language and it’s the communication, so it may be affected by the colleague I’ve had the week before who has various things in a certain way and I know or I disagree and I’m going to have to spend the rest of my week trying to talk to the family to bring them in more align with the realistic expectations.” Participant no. A02 |
Environment, context and resources | |
• There is a lack of communication at shift changes | 4 (20.0) | |||
• There is no opportunity to follow-up with patients once they leave the ICU | 3 (15.0) | |||
Critical care physicians are different from other disciplines: | 6 (30.0) | “As a critical care physician, you don’t necessarily have that perspective that the neurosurgeons do, then go on to look after these patients for months and months and then actually see them as outpatients. That’s why they tend to be much more aggressive than us because they have seen those miracle cases. So they are much more cautious about saying that anything is definite.” Participant no. D04 | Social, professional role and identity | |
• We have a limited opportunity for follow-up once the patient leaves the ICU | 4 (20.0) | |||
• We have specific knowledge that makes us best able to make decisions about WLST | 2 (10.0) | |||
• Neurosurgeons are not as interested in palliative care as we are | 1 (5.0) | |||
Adequate training during my fellowship has helped me to be able to make decisions to WLST (n = 4) and communicate with families (n = 2) | 5 (25.0) | “It’s not to say that experience doesn’t play a role as in clinical working experience after training, that hopefully further hones the skills, but most people should have the necessary skills by the time they finish training. I don’t think there’s any other skills specific to this and the experiences should be those that are required through training.” Participant no. A05 | Skills | |
The culture in the ICU affects our decision-making; we tend to be very conservative when making decisions to WLST | 5 (25.0) | “Maybe we talk to each other, but I think that tends to be the approach at our centre to be more conservative and be more certain about outcomes before suggesting withdrawal of life support. We’ll certainly be open about our concerns about disability associated with this and what that would be like for them and find that when they’re young, most families wish to continue until it’s clear” Participant no. C02 | Environment, context and resources | |
During | Having guidelines and prognostic tools, and standardization would help to facilitate making decisions about WLST | 17 (85.0) | “I think that we do need better understanding of the evolution of these patients and some kind of guidelines because I think centres will be acting very differently based on the local preferences, culture, and different things, but I think there’s a lack of data and a lot of uncertainty in these patients. So if we can gather more data, have a better idea then it’s going to make decisions easier.” Participant no. B03 | Behavioural regulation |
Access to and quality of physical resources may or may not (n = 5) affect our ability to make decisions to WLST: | 14 (70.0) | Q: “Are there any aspects of your work environment that influence your decision to withdraw life-sustaining treatment in a patient with a severe TBI?” A: “Sorry, I’m hesitating because the right answer is no. The true answer might be that we have a database of injuries and withdrawal and care and stuff like that, it’s part of our ICU database. And from our ICU database, there’s an increase in the number of withdrawals of life-sustaining therapy at times when the unit is full. […] I have never consciously said oh yeah, we can kind of finish off that one so that we can get another bed. I think that would be horrendous as a profession. So I believe the correct answer is no, but I’m aware of this data and I don’t know how to interpret it.” Participant no. C04 |
Environment, context and resources | |
• Current prognostic models are not ideal | 8 (40.0) | |||
• Lack of resources and beds can influence us to decide to WLST | 5 (25.0) | |||
• Our institution is well supported and the resource access is not limiting | 5 (25.0) | |||
In our centre we have access to professional resources: | 12 (60.0) | “So as I already mentioned, we have a lot of support around — so we have very good and very accessible ethics consultants, social work, chaplaincy, so we have a lot of people that can both support us as a team as well as the families during difficult decision-making, I would just say that the hours of availability could be better — yeah, probably just the hours.” Participant no. A04 | Environment, context and resources | |
• Support personnel for the family, but there is not very good off-hours access | 6 (30.0) | |||
• Access to support from neurosurgery, neurology and nurses, but, at times, they are not available to support us | 5 (25.0) | |||
• At times they are not available to support us | 2 (10.0) | |||
Aspects of my work structure influence the decision-making process for WLST: | 7 (35.0) | “Well, as a general rule, none of these decisions are made by 1 person in our centre.” Participant no. D03 | Environment, context and resources | |
• Decisions to WLST require consensus | 4 (20.0) | |||
• There are always at least 2 critical care physicians working | 4 (20.0) | |||
Withdrawing life-sustaining treatments for patients with severe TBI may benefit other patients: | 7 (35.0) | “I think there are advantages there and from a resource utilization point of view, which obviously shouldn’t be part of our mindset on an individual patient, but from a resource utilization point of view, withdrawal of life support in a patient who’s likely to be a high resource patient going forward, either from a dependency or a chronic ventilator bed use or things like that, if families prefer the option of withdrawal of life support if there’s a resource benefit.” Participant no. A04 | Beliefs about consequences | |
• Organ donation | 5 (25.0) | |||
• Free up resources | 2 (10.0) | |||
WLST can have benefits for the patient | 6 (30.0) | “The main positive aspect would be to prevent the patient from evolving toward severely handicapped or neurovegetative state, which typically they would not have wanted or the family doesn’t want, so I think part of our role is to present that if that’s not what they want, that’s from a positive part.” Participant no. B03 | Beliefs about consequences | |
Educational tools and support services are needed to help facilitate the discussions with the families and help them to make decisions about the WLST | 6 (30.0) | “And so there is a real disconnect sometimes between medical team and the laypersons involved in the care of the patient. So I do think that better supports for the families, better supports for the patient in terms of education and training and comprehension around traumatic brain injuries, better understanding of outcomes. I don’t know if, for example, taking people to see people who have survived a severe traumatic brain injury event, giving them more information about it.” Participant no. A01 | Behavioural regulation | |
WLST can have positive (n = 5) and negative (n = 3) outcomes for the family | 5 (25.0) | “The positives that I would see are that an individual is not left potentially institutionalized and under the care of individuals …. We prevent that outcome from happening. We potentially allow family members closure on a severe devastating injury that would alter a person’s life not for the better.” Participant no. C01 | Beliefs and consequences | |
There are negative consequences to deciding not to WLST: | 5 (25.0) | “Also, the opposite is true that if you don’t engage in the discussion, you may help an individual survive to a quality of life that they or their surrogate decision-maker may not be accepting of. It’s a very difficult decision.” Participant no. C01 | Beliefs and consequences | |
• We are unable to offer good end-of-life care | 2 (10.0) | |||
• The patient may survive to a quality of life they would not have wanted | 2 (10.0) | |||
• The patient may linger in the ICU | 1 (5.0) |
Note: ICU = intensive care unit, TBI = traumatic brain injury, TDF = Theoretical Domains Framework, WLST = withdraw life-sustaining treatments or withdrawal life-sustaining treatments.
Some critical care physicians may have identified more than 1 factor within a theme; the cumulative number of participants may be greater than the total number of participants (in boldface type).