Background
Methods
Research design
Research setting
Study participants
Occupational background | Age group | Gender | English as first language | Total | |||||
---|---|---|---|---|---|---|---|---|---|
18-29 | 30-41 | 42-53 | 54-65 | F | M | Y | N | ||
Health Care Assistants (Carers) | 7 | 3 | 2 | 2 | 9 | 5 | 8 | 6 | 14 |
Administrative staff | 1 | 0 | 0 | 0 | 1 | 0 | 1 | 0 | 1 |
Activities staff | 0 | 1 | 1 | 0 | 2 | 0 | 2 | 0 | 2 |
Catering staff | 1 | 1 | 0 | 0 | 0 | 2 | 2 | 0 | 2 |
Hosting staff | 0 | 0 | 1 | 0 | 1 | 0 | 1 | 0 | 1 |
Total | 9 | 5 | 4 | 2 | 13 | 7 | 14 | 6 | 20 |
Occupational background | Nos. of participants | Completed course | SHA questionnaire completed | Author questionnaire completed | Interviews | ||||
---|---|---|---|---|---|---|---|---|---|
Pre | Post | Both | Pre | Post | Both | ||||
Health Care Assistants (Carers) | 14 | 8 | 14 | 8 | 8 | 9 | 6 | 4 | 10 |
Administrative staff | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 |
Activities staff | 2 | 1 | 1 | 0 | 0 | 1 | 0 | 0 | 1 |
Catering staff | 2 | 1 | 2 | 1 | 1 | 1 | 1 | 0 | 2 |
Hosting staff | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 |
Total | 20 | 12 | 19 | 11 | 11 | 13 | 9 | 6 | 15 |
Data collection
Data analysis
Research ethics
Results
Changes in understandings and confidence regarding end of life care
NHS SHA questionnaire
Resident notes audit
Freetext questionnaire
Item and content | Non-carer | Non-carer | Carer | Carer | Carer | Carer |
---|---|---|---|---|---|---|
1. Appropriate time to initiate end of life care
| Shift from physical to more holistic definition of appropriate timing for initiation of end of life care | Pre-course questionnaire left blank; post questionnaire defined end of life as the last year of life and/or initiated at any time, according to preferences | Shift from generic awareness of need for EoL care when ‘condition starts to deterioriate’ to a more precise ‘within the last year to six months of their life’ | Shift towards more precise definition of timing for EoL care (from ‘upon admission’ to ‘1 yr prior to expected death’) | Shift from generic ‘upon admission’ statement to patient-focused concern – end of life care initiated when required and on advice of medical team | Shift towards broader understanding of timing for initiating end of life care (i.e. at point of admission rather than with diagnosis of impending death) |
2. Main aims of end of life care
| Shift from idea of keeping residents physically and emotionally comfortable to wider understanding incorporating ideas of dignity and respect | Pre-course questionnaire left blank; post questionnaire set out aims as ensuring residents’ needs are met and holistically treated | Slightly fuller definition of the aims of EoL care, from keeping residents ‘comfortable’ to keeping them ‘comfortable and happy’ | Shift from minimal definition of EoL care as carrying out residents’ and families’ wishes to ensuring ‘that the person can have the best death possible’ and ‘to die with dignity and die how they want to’ | Pre-course questionnaire gave fuller definition of end of life care aims, perhaps reflecting this carer’s previous nursing training | Shift towards more content in idea of end of life care, from ‘best care and understanding’ to ‘dignity, comfort, and meaningful life’ |
3. Tasks and tools involved in end of life care
| Little shift; non-carer already recognised the wide range of tasks that can be involved in EoL care | Pre-course questionnaire left blank; post questionnaire showed awareness of pain relief, wellbeing, social inclusion, LCP, GSF, PPC | Mention in the post-course questionnaire of one of the EoL tools (LCP) | Left blank in pre-course questionnaire; in post-course questionnaire, substantial content including talking to patients, assessment, planning, implementation and evaluation of care, including aftercare | Both left blank | Fuller content in the pre-course questionnaire; post course merely states ‘EoL[end of life] is a vital tool to give meaningful life to a person’ |
4. Responsibility for end of life care
| Post-questionnaire blank; pre-questionnaire recognises that everybody has a role in EoL care | Pre-course questionnaire left blank; post questionnaire stated that end of life care is everyone’s responsibility, but care staff in particular | Slight shift towards wider definition of who is responsible for EoL, from nurses, carers and doctors to nurses, carers, GPs, and families | Shift from staff looking after residents and family, to wider understanding of responsibility – ‘whatever organisation/home/hospital… it is a collective team…[with] responsibility to carry out EoL care’ | Pre-questionnaire blank; post-questionnaire acknowledges that all staff involved with resident have responsibility for end of life care | No shift; carer already recognised the need for all occupations to be involved |
5. National guidelines and policies
| Post-questionnaire blank; ‘Not sure’ in pre | Pre-course questionnaire left blank; post questionnaire mentioned the Mental Health Act | Both left blank | Significant shift from ‘government [web]sites’ to mention of Gold Standards Framework, Advanced Care Planning, Preferred Priorities of Care, Mental Capacity Act, powers of attorney, deprivation of liberty | Pre-questionnaire blank; post-questionnaire notes Gold Standards Framework and the Liverpool Care Pathway | Shift towards recognition of importance of dementia and vulnerable adults guidelines, and relevance of end of life to a wide range of policy areas |
6. Necessity for specialist training in end of life care
| Post-questionnaire blank; pre-questionnaire recognises training as important | Pre-course questionnaire left blank; post questionnaire stated that training was ‘very necessary… to understand our residents preferences to ensure they have the best possible care’ | No shift: both pre and post stated that end of life care training was ‘useful’, without elaborating | No shift in recognition of importance of course (‘very important’) but carer added ‘I have learnt so much from this course’ | Pre-questionnaire blank; post-questionnaire recognises the need for specialist training in end of life care, as ‘it is the last thing you can do for somebody before they die’ | Little shift; carer had already recognised the importance of training |
7. Sources of information on end of life care
| Post-questionnaire blank; pre recognises internet, in-house training, policies | Pre-course questionnaire left blank; post questionnaire mentioned books, leaflets, and video | Both left blank | Shift towards wider awareness of resources, from ‘internet, books etc’ to ‘videos, books, government websites, internet, colleagues, policies’ | Both left blank | Slight shift from internet resources to ‘all sources of info’ |
8. Contribution of e-learning to end of life training
| Post-questionnaire blank; pre-questionnaire emphasises the need for time to carry out e-learning | Pre-course questionnaire left blank; post questionnaire mentioned e-learning as a source of information | Both left blank | Little substantive shift; pre questionnaire stated that e-learning can make a ‘big contribution’ while the post questionnaire stated that e-learning allows users to ‘be educated and learn about certain topics’ | Both left blank | Shift from generic remark on the importance of training towards recognition of e-learning in particular – ‘easy and convenient’ |
Interviews
It has helped me a lot in dealing a resident towards their end stage. In a way I learned things unfamiliar such as the … components of [the] LCP [Liverpool Care Pathway]. Also a deeper understanding of different symptoms that affect comfort and well-being.CarerI took on board from this [course] that people do down and they might come up a little bit … It’s not always a smooth fade out… Whereas I think prior to doing this [course] I just believed, “Well, they’re just going to die.”Carer
you shouldn’t… put suction into somebody’s mouth when they’re a bit clogged up… I didn’t know that and certainly when I first worked here we had someone dying and the person in charge was using the suction machine… [But] you don’t have to do this and you can adequately clean somebody’s mouth with a soft toothbrush… [and] gently get that out… [It’s] little things you can do to make them more comfortable.
…[T]hrough doing this course I’m now very aware… I spoke to [one resident’s] daughter about their wishes and I said “I don’t want you to tell us now, I don’t want you tell us next week, go home, talk to your family about it and then bring it back to us when you’re ready,” …so I’d already instigated that [idea of] “What do you want for your dad when he dies?” … what we are doing is picking up on what we know they like, talking to the family about what they know about this person.
I now think about talking to [residents] about the end of life instead of just brushing it away… from this [course] it was like, well, maybe there is something that I can do… before I get a carer [to come and help].
I feel confident to discuss dying with patients and relatives. Before I wasn't sure or confident about discussing death and perhaps a little afraid of death myself. Looking after a dying person has become clearer and I now feel more comfortable with this.I’ve certainly put [the training] into practice because we have had a few people die since… I took it upon myself to say right, we need to know their mouth care has been done… that they’ve been changed and they’re comfortable.
People [i.e. fellow course participants]… spoke about… the fact that if I go home it’s my time… and I’m not going to be paid for that time…People feel like it’s part of their time is being taken by work.Carer
Workshop observations
Facilitator (F): What forms do you remember apart from the DNR [Do Not Rescuscitate]? [Mentions the Advanced Decision to Refuse Treatment form.]… Does anyone have these kinds of forms here? Have these forms been implemented?Carer 1 (C1): I don’t know.F: You can find out if they have such forms. The forms are useful when patients can’t speak for themselves… You must all know who’s for resuscitation and who’s not. Can anyone think of cases where the forms would be useful?… Do you have any feeding tubes here?Carer 2 (C2): Not any more.F: It’s difficult to know when to stop feeding them. But with a form – it’s clearer when they want it and when they don’t.C1: Is it giving them the right to give up?F: Well, what are the benefits of the form?Carer 3 (C3): It’s an opportunity for them to give up and have a better quality of life?F: Everything is a balance with quality of life. It’s about having control – not necessarily giving up. What are the benefits of advanced care planning? It stops crises from happening… Let’s review what you know about the GSF. Have you heard about it?C1: Heard about it, yes, but no more.F: […] It’s about standardising care in the last year of life.C3: Is that with the different coloured stars?F: Yes. And the seven Cs? [Explains GSF colour-coding and the ‘seven Cs’: communication; coordination; control of symptoms; continuity; continued learning; carer support; care in the dying phase] … It’s all about good communication.Non-Carer 1 (NC1): Sometimes if someone dies at the weekend, I might not know until late on Monday.Non-Carer 2 (NC2): Sometimes communication falls through. I could be making a birthday cake for someone who’s passed away. We need a system to notify everyone.F: That’s part of aftercare in the GSFs – for nurses or anyone. Because the administrative staff need to know, for their interactions with GPs, relatives, and so on.
I was a little afraid of dying before coming on this course, but now I’ve got the confidence to see it as a normal part of life and that helping people die with dignity is very important.
Barriers to change in practice
Lack of post-course discussion at Elm House
When we did the course, we were very up for talking to people [about end of life care issues]… [But] we’ve had new residents recently, and do you know what, thinking about it just now, I haven’t spoken to them about it… [I’ve] forgotten to.
Inter-professional barriers
[M]ost of the time I just see them in passing, we might get a few minutes to stop and talk but not a lot and not really in-depth about anything… I don’t … really have a lot of contact with the carers, because obviously if they’re washing and dressing people, it’s all behind closed doors, so I .. don’t really know what they’re up to.
[the carers have] some fantastic training but we’re not allowed to put it into practice… I have heard on many occasions nurses say, I’m the trained staff, you do like I say… but [carers] can very easily see that there’s something wrong with somebody.