Table 5.
The classification of the usual care.
Similarities and embedded practices | |
---|---|
Admission and current care planning
Initial medical history, assessment processes and care planning consistent across study sites. 87% (n = 20) of clinical staff reported completion on patient admission in usual care questionnaires; 73.9% (n = 17) stated specific time frame (within 6 and 12 h for control sites 1 and 2, respectively; and ⩽24 h for intervention sites at baseline). Presence of electronic scoring systems (e.g. Patient at Risk Score) mentioned in focus groups and usual care questionnaires at all sites to highlight patients for prioritisation during night/weekend shifts. All usual care questionnaire respondents stated medical plans reviewed daily; five stated this occurred rarely at weekends. | |
Communication with patient and
family
Case note reviews identified patient and family discussions documented in clinical notes for most patients (range 65% (n = 13) at intervention site 2 to 95% (n = 19) at intervention site 1 (Table 4)). In case note reviews, daily follow-up discussions were present in 60% (n = 12) (intervention site 2 and control site 2) to 95% (n = 19) (control site 1 and intervention site 1). 82.6% (n = 19) of usual care questionnaire respondents stated contact would be made with family immediately if patient deteriorated, whereas three respondents stated informing another team member. | |
Escalation decisions
Case note reviews showed escalation plans, and decisions regarding ‘do not attempt resuscitation orders’ to range between 60% (control site 2) and 90% (intervention site 1), and 75% (control site 2) and 100% (intervention site 1) of patients’ notes, respectively. 56.5% (n = 13) of usual care questionnaire respondents stated investigations stopped once patient recognised as dying and rarely a small percentage of patients would have further investigations. Three respondents highlighted escalation decisions relied on recognition of deterioration influenced by clinical uncertainty resulting in delays halting further investigations. Consequences of not recognising deterioration mentioned during focus group. |
Illustrative quotes |
You’re told that by the doctor to take some blood when you get to the patient’s arm and he has no access and he’s been unconscious. So, you’re trying to get access, but the situation is distressing for you, and distressing for the family. (1018, Ward sister) | |
Recognising clinical uncertainty
At baseline, usual care questionnaire respondents were familiar with factors relating to situations of clinical uncertainty. Across all sites, common responses referred to poor treatment response (30%, n = 7), followed by poor scores (17.4%, n = 4), multi-morbidities (13%, n = 3) and frailty (8.7%, n = 2). Documentation of clinical uncertainty across sites ranged (60% (n = 12, intervention site 2) to 90% (n = 18, control site 1)) of case note reviews. Frailty for recognising clinical uncertainty was mentioned during focus group. |
People who are getting frail and deteriorating slowly, it’s a week or two after they get there. (2020, Consultant) |
Emotional support to staff
All study sites possessed infrastructure for staff emotional support (e.g. electronic resources and counselling). However, usual care questionnaire and focus group respondents noted they rarely made use of services, turning to each other support. |
We’ve got a well-being system that can be accessed by
any member of staff for support. (1021, Research
nurse) I don’t think any of us know about it. I tend to find that as nurses we provide support for one another about how difficult that conversation with that family and that kind of thing and we just look after one another, but there’s no formal system that I’m aware of. (1022, Staff nurse) |
Heterogeneity within and across study sites | |
Documentation of deterioration and specialist
involvement
Management of clinical uncertainty differed between disciplines/sites. Usual care questionnaire identified divergence among respondents about whether clinical notes of patient would reflect ‘death was likely to occur (during their hospital stay (or shortly after)’, and patient/family’s insight (The dying person and their family were aware of situation) into their clinical situation. All questionnaire respondents at control site 2 stated patients’ notes include information about likely death, patient/family insight. At other study sites, opposing views indicated heterogeneity among healthcare professionals’ practices within same ward about documentation practices and information provided to patients/families. Nearly all (92%, n = 21) respondents across sites stated feeling at ease with making palliative care referral, albeit with delays. At control site focus groups, a continuation of delays in recognising deterioration throughout trial present. |
Not recognising the patient is near ‘end of
life’. (Intervention-Site-2004, Staff
nurse) Not having a senior clinical decision. (Control Site-1005, Healthcare assistant) Doctors continuing to treat even though the patient is dying. (Intervention-Site-2002, Ward sister) Uncertainty of doctors. (Intervention-Site-1002, Ward sister) Uncertainty in diagnosis. (Intervention-Site-1006, Physician associate) You think if these discussions had taken place maybe last week, then we wouldn’t be at the point we’re at now. You do ask yourself that quite a lot. (1018, Ward sister) |
Advance care planning
Advance care planning documentation practices and supporting patients’ preferences at end of life varied. Case note reviews at baseline identified documentation of advance care plans (range 10% (n = 2) (intervention site 2) to 40% (n = 8) (control site 2)). 21 of 80 patients had advance care plans documented. Patients’ ‘preferred place of care’ recorded for 45% (n = 9, control site 1), 70% (n = 14, intervention site 1), 85% (n = 17, intervention site 2)–95% (n = 19, control site 2). 78.2% (n = 18) of usual care questionnaire respondents state ‘the whole MDT, patient and family’ involved in devising advance care plan. Staff acknowledged on-going process of advance care planning outside hospital with GPs. Int1005 referred to advance care planning as ‘something which needs to be improved on the ward’. Other healthcare professionals from same site highlighted holistic approach involving other professionals. Responses about frequency of revising advance care plans with patients/family varied from not often enough (control site-2004 – Senior Doctor) to daily (control site 1005, control site 1004 – Junior Doctors). Triggers included end of life, deterioration, poor prognosis, terminal illness, futility of treatments, and frequent admissions given for advance care plan initiation. Of 23 responses to ‘What are the triggers for devising or starting the necessary procedures for devising an advanced care plan for a patient on this ward?’, only three respondents mentioned patient/family wishes to raise questions about patients’ and families’ roles in devising plan. | |
Decision-making and communication between ward
staff
Medical teams’ roles in devising medical plan highlighted by nursing and assistant/associate staff across sites in usual care questionnaires. Case note review identified agreement with patients’ final medical plan with nursing staff (range 45% (n = 9, control site 1) to 95% (n = 19, intervention site 1)). Usual care questionnaire respondents (n = 20) reported involvement of multidisciplinary team in making decisions about patients’ situations. However, views from focus groups did not concord with. Instead, possibility of team members to communicate concerns about patients highlighted by control site staff. |
I think it’s hard for the front line staff to deal with
because we’re the ones who are taking the blood from them
and we’re putting cannula after cannula after cannula and
not getting any joy and you know, many problems will come
from just simply needing to treat but we get the front line.
We have to stand and try to take the blood in front of the
family and all that. It’s different for a doctor to
say ‘Yes, carry on treating them’.
But they’re not actually the ones in the room
delivering the care. I don’t know. I think that’s always
quite hard on the nursing staff. (1018, Ward
sister) As a junior, you don’t have much say really on dramatically changing management plans. Uhmm but anytime I do have I think that when I see a patient, I’m a bit uhmm there’s a discrepancy between what I think, how they should be managed then what is currently being done, then discuss it with my seniors. (2011, Junior Doctor) |
Competence and confidence in communication
Although some senior healthcare professionals confident discussing situations of clinical uncertainty with patients/families, others stated in usual care questionnaires and focus groups lack of proficiency with this aspect of care. Hence, communication between healthcare professionals and patients whose situations were clinical uncertainty and families varied and depended on individuals’ skills. Impact of individual attributes/contextual factors including limited time for communication highlighted during focus groups. |
I find it quite awkward. If you need to break bad news
to them then you’re going to, it’s going to be emotional for
yourself, isn’t it? It’s quite hard to break bad news and
that’s why people always look to somebody who’s used to
doing it a lot. (1018, Ward sister) I find it very time-pressured, very limited time to deal with quite complex issues. (2020, Senior doctor/clinical lead) |
Subtle changes in usual care at control sites | |
Aspects of usual care provided to patients whose situations were clinically uncertain remained unchanged at control sites. However, changes in referral practices to palliative care team and improved confidence communicating with patients/families observed at control site 2. A senior doctor (baseline usual care questionnaire not comfortable making palliative care referrals for non-cancer patients) stated, during focus group, at end of trial her conduct improved, a view shared by colleagues. Although no changes during trial recorded at control site 1, plans for hospital-wide implementation of similar intervention mentioned during focus groups. |
It helps us I think reflect a bit more on non-cancer
patients. . . To make the team more aware that this may be a
group that we previously missed in terms of getting them
identified and also support for end of life. (2021,
Senior doctor/clinical lead) Generally, escalation plan. Like, where they. . . if anything was to happen at that admission, how far would that patient and family want? What are their wishes? Would they want to be on ITU, tubed and that sort of stuff. . .? They sound quite similar; I’m thinking relating to AMBER. (1018, Ward Sister) |
MDT: multidisciplinary team; GP: general practitioner; ITU: intensive therapy unit.