Introduction
Methods
Sample and Setting
Sample
Setting
Analysis
Phase | Process | Means of establishing trustworthiness through each phase of analysis |
---|---|---|
1: Detailed reading of the transcripts, to develop familiarization and full immersion with the data | This involved “repeated reading” searching for meanings and patterns. Noting down initial ideas | Prolonged engagement with the data and documentation of all initial thoughts in field notes |
2: Generating initial codes | Interesting features of the data were coded in a systematic way across the data set, collating data relevant to each code using an excel spread sheet | Peer debriefing in which the initial codes were discussed with experienced qualitative researchers. A reflexive journal was used to document decisions and help to synthesize the data. To assess inter-coder reliability, four transcripts were independently coded by an experienced researcher for any discrepancies |
3: Searching for themes | Codes were collated into potential themes, gathering all relevant data to each potential theme. Initial ideas of themes were outlined on paper flip charts to develop a visual representation of the data | Use of diagrams on paper charts to make sense of theme connections and hierarchies of concepts. Use of photographs to show how themes were developed |
4: Reviewing themes | The themes were then checked to see if they worked in relation to the coded extracts (level 1) and the entire dataset (level 2). Following this, a thematic map of the analysis was generated on paper flip charts | Themes and subthemes were discussed and reviewed at regular intervals with the research team. To test for representiveness of themes, the researcher returned frequently to the raw data at various stages |
5: Defining and naming themes | On-going refinement of the themes was undertaken to portray the overall story that the analysis revealed, generating clear definitions and names for each theme | Peer debriefing and clear documentation of meetings regarding theme development and select representative statements |
6: Producing the report | A selection of vivid, compelling extract samples were included in the final analysis relating back to the research aim and literature | Member checking by going back to several participants and checking that themes reflected the transcripts and peer debriefing. Clear description of decision-making and analytical process |
Results
Job role | Position and grade | Length of neurocritical care experience (Yrs) | Nurses trained in neuroscience Y/N |
---|---|---|---|
Nurse | Band 6 | 5 | Y |
Nurse | Band 7 | 10 | Y |
Nurse | Band 6 | 13 | Y |
Nurse | Band 7 | 15 | Y |
Doctor | Consultant Neurointensivist | 10 | – |
Nurse | Band 5 | 1 | N |
Nurse | Band 6 | 5 | Y |
Doctor | Consultant Neurointensivist | 23 | – |
Doctor | Consultant Neurointensivist | 17 | Y |
Nurse | Band 7 | 13 | Y |
Doctor | Consultant Neurointensivist | 4.5 | – |
ClinicalNurseSpecialist(CNS) | Band 7 | 25 | Y |
Nurse | Band 5 | 2 | N |
Doctor | Stroke Consultant | 10 | – |
Doctor | Stroke Consultant | 1 | – |
Doctor | Consultant Neurointensivist | 15 | – |
Nurse | Band 6 | 3 | Y |
Doctor | Consultant Neurosurgeon | 12 | – |
Nurse | Band 7 | 15 | Y |
Doctor | Consultant Neurosurgeon | 20 | – |
Doctor | Neurosurgical Senior Registrar | 8 | – |
Prognostic uncertainty
Neurosurgeons questioned the benefits of neurosurgery.We have had patients who have had some very deep bleeds who have then started obeying 2 or 3 weeks later because they are a very slow group to do anything. (N1)
Patient characteristics known to be predictive of poor outcome such as older age, existing comorbidities, and frailty presented challenges.There is no agreement [on] what is the best way of doing things. On one extreme, people do very aggressive surgery, others who do no surgery at all. (S1)
Neuroimaging findings such as the size and location of ICH were considered predictive of patient outcome but even those were unreliable.…anyone who’s in their 80’s and you can see that they are frail, they’ve got poor muscle mass and they are thin and they’ve got other comorbidities, it is obvious they are not going to do very well. (D7)
Some ICH patients recovered much better than initially expected:They can have a really bad scan but they look different when you assess them GCS-wise…it’s looking at the GCS really and how they are. (N11)
Prognostic uncertainty was compounded by uncertainty about long-term outcome. Participants considered knowing long-term outcomes would help develop their ability to prognosticate and advise families.… you see these patients as pretty all doom and gloom and he made me realise that with good supportive care these patients can do very well. (D7)
Some participants wanted to know what survival meant from the patients’ perspective.The challenges are predicting outcome really. It’s knowing what’s going to happen to them, a very hard thing to predict to families. (D2)
… is he still glad to be alive or is he deeply upset that he can’t do the things that he used to? (D4)
Subjectivity of Good Versus Poor Outcome
Independence and ability to conduct activities of daily living (ADLs), was considered a good outcome.Cognition is the most important. (S3)
Survival at the cost of severe disability requiring full care with ADLs or in a persistent unconsciousness state was consistently considered a poor outcome.… to function again…like every other person. The relatives want their dad back, they don’t want their dad to be back with a disability, so a good outcome would be to recover from this illness as fully as possible. (N2)
Although death was generally considered a poor outcome, one participant judged a 97-year old ICH patient’s death differently.…the worst ones are the ones who are left unable to communicate, unable to look after themselves with no sort of way out, I think. (D2)
Participants recognised that perceptions of outcome were subjectively interpreted by individual clinicians, individual patients and their families.Sometimes a good outcome is death, cos it’s natural, isn’t it? (N3)
Pessimism was evident.…I always try to remember not to judge my perception of what a good quality of life is by others and remember that people’s idea of quality of life changes down the line as well…it’s fluid. (N5)
However, clinician’s perceptions could change.They never really return to much independence and they, very often, have a pretty miserable time in hospital afterwards and end up dying from medical complications. (D7)
…a patient who looked like they were going to do very badly indeed…he was very happy with his outcome of being completely hemiplegic and happy that he had lived and I suppose that was an important lesson for me. (D4)
Perceived Inappropriate Care (PIC) Situations
Inappropriate admissions included frail patients with pre-existing comorbidities and already fully dependent on others for ADL.Pupils had already blown…it wasn’t fair on the family to have to come to another hospital and give them hope and things. (N1)…a patient who is elderly with lots of comorbidities with a big clot, what is the point? (D2)
Participants frequently described situations where the aggressiveness of on-going treatment seemed inappropriate.Looking at their past medical history, were they, very, very dependent on carers and things like that?…you can already see the failure. (N8)
Prolonged use of aggressive supportive treatment was perceived as ‘cruel’.… they gave her decompressive craniectomies, which was absolutely horrendous, and I really could not believe why we were treating this lady.(N3)
Admitting severely affected ICH patients to neurocritical care gave “false hope” to families making their expectations unrealistic and challenging to manage.When they need more blood pressure control and they start getting a chest infection and everything else, it starts getting cruel, more cruel than kind.(N1)
PIC situations raised ethical issues surrounding futility, best interests and the use of resources.…then you are in a situation where the family are expecting a miracle because they are still waiting for them to wake up. They have been given false hope. (D2)
Death was frequently perceived as being ‘medicalised’.Sometimes you feel things are a bit futile…you are doing things that are…not in the patient’s best interests. (N3)
Perhaps the person just has not been allowed to die from an end-of-life event. We are intervening inappropriately to prolong a dying process. (N8)
Challenging Nature of Decision-Making
Knowing patient’s wishes in advance aided the decision-making process surrounding the aggressiveness and duration of on-going treatment.Lack of holistic assessment. (D6)
Participants were alert to avoiding early-phase pessimism.…if you know someone’s views very early on, it can make difficult decisions… a little easier. (N4)
There was consensus that most ICH patients should be given a chance of early supportive care.You shouldn’t have a preconception really early on in the decision process of what their outcome is going to be, no matter what their age. (S2)
Participants considered that decisions about further supportive treatment should wait until ICH patients had been given a trial of treatment in neurocritical care for at least 48-72 h. Several spoke about putting limits on the level of treatment given.Throw the kitchen sink at everyone.” (D5)
Deciding to transition to palliative care was particularly difficult for the direct care team and families.Agreeing a ceiling of care, in my opinion, is ethically acceptable. Saying that if the patient has a bad chest infection maybe he should not be on a ventilator again. (S1)
One participant talked about the need for more shared decision-making.I find this really difficult because it’s really hard to get my head around. So I should imagine families must find it really hard to get their heads around. (N5)
We are not good at meeting together and exploring all of these points of view together and sharing the responsibility for continuing in an active way or moving to palliative care. (D6)
Clinician distress
Participants talked emotively about feelings of distress, sadness, and guilt.Complex group, with medical complexities that are unfamiliar and challenging. (D6)
Nurses frequently expressed sadness when patients survived with severe disability.Excessive treatment…that we perceived not…to be worthwhile or sensible to put the patient through or put the family through that degree of torture in ITU. (D3)
Nurses particularly felt conflicted.Patients that don’t wake up, low GCS, extending, they make me feel quite sad. (N1)
The medicalisation of death caused distress.When patients have a very, very extensive bleed and we know that even if they survive they will be severely disabled and we still admit them and give them full treatment to confirm that after 4,5,6 weeks that they are doing very poorly because of the extent of the bleed, so is it worth it? (N9)
Clinicians offset feelings of distress by providing good palliative care.When you can see that actually we are doing more harm than good here by just prolonging the inevitable. (N10)
We fight for people…to transition them to palliative care…I wouldn’t say it is a failure on our part, I think we should view it as another process to aid the patient in a different way. (N10)We can actually give them the proper palliative care. (N7)