Background
Benefits of EOL care discussions
Barriers to care discussions
Rationale and aim
Methods
The Compassion Intervention
Interdisciplinary care leader
Intervention component 1: facilitation of integrated care
Intervention component 2: training and support for families and carers
Nursing home settings
Data collection
ICL reflective diary
Interview data
Family carers
Staff/formal carers
Data analysis
Results
Themes | Findings | Supported in diary | Supported in interviews |
---|---|---|---|
Educating family and staff about dementia progression and EOL care | Families and staff needing and wanting more information about diagnosis, symptoms and progression of dementia | ✓ | ✓ |
NH staff lacking confidence to initiate and have EOL conversations | ✓ | ✓ | |
Staff attributing symptoms and behaviours to dementia without trying to identify an underlying cause | ✓ | ||
Training and case scenarios increasing staff confidence and being able to see things from the families’ perspective | ✓ | ✓ | |
Discussions with family appear to increase their capacity to make informed decisions, eg around cardiopulmonary resuscitation | ✓ | ✓ | |
Family sessions generated much discussion and appeared a good avenue for education | ✓ | ✓ | |
Usefulness of written information to support discussions | ✓ | ||
Importance of ICL as a role model to staff in having conversations with family and communicating with residents with advanced dementia | ✓ | ||
Appreciating the value of in-depth EOL discussions (over documentation) | Importance of ongoing dialogue with family to build relationships, provide reassurance and allow time for family to process information | ✓ | ✓ |
NH staff prioritising documentation such as DNAR or not for hospitalisation over ongoing dialogue – task oriented approach and not appreciating the complexity and need for individualised approach to these discussions | ✓ | ||
Importance of addressing family member’s current issues and concerns before discussing future plans | ✓ | ||
Need to acknowledge family members’ grief and guilt | ✓ | ||
Difficulties communicating in English prohibit in-depth and sensitive conversations about EOL | ✓ | ✓ | |
Importance of information provided in a sensitive way | ✓ | ✓ | |
Providing time and space for sensitive discussions | Not suitable having sensitive conversations with family in communal areas such as lounge or dining room | ✓ | |
Spending sufficient time with family to address their questions and explore their concerns – including follow-up sessions/ongoing dialogue. The ICL was able to provide this time. | ✓ | ✓ | |
NH staff and GP having multiple demands preventing spending focused and uninterrupted time with family | ✓ | ✓ | |
Having an independent healthcare professional or team with responsibility for EOL discussions | ICL role was independent from GP and NH and considered to be primarily in interests of resident and family | ✓ | ✓ |
Independent person provides alternative and fresh view of the residents’ needs and care | ✓ |
Educating family and staff about dementia progression and EOL care
…I don’t want to see things in the care plan such as the resident fell because of dementia, the resident is not eating because of dementia. I want [staff] to think a bit more deeply about what is happening to the resident and what the resident might be trying to communicate, to think of unmet needs etc. (ICL)
One nurse said that she felt…more confident talking to family…after the case scenarios…another nurse said that she could think more from the perspective of the family member… (ICL)I did gain some experience from… like I was the patient [family] and you were the nurse so I was you know… [Interviewer: role-playing]… We had role-play and I found that very, very, very, very useful. (NH2 Nurse and Deputy Manager)
It's quite good…you can see how she [ICL] explains to them [family] and…the difference is between us talking to them and a professional like her… (NH1 nurse)
There was a lot of discussion… about dementia…diagnosis process…acceptance of dementia amongst family and…society…how this hindered the diagnosis process… early part about dementia identification, diagnosis, symptoms…family inheritance (ICL)
She [ICL] was the one who spoke to me and gave me a very good leaflet to read, the stages she would go through and that did make… it a lot clearer… So in that sense that was excellent and …she was very caring and she was the one that explained it all to me (NH2 Family member)
I started telling her why this (cardiopulmonary resuscitation) can be inappropriate for someone in the advanced stages of dementia…the likelihood of it being successful was very low. She said that when you put it that way it made more sense… (ICL)
Appreciating the value of in-depth EOL discussions (over documentation)
When I have plenty of time and sometimes talk to family members for well over an hour, we don’t usually get to a point where they are ready to complete an ACP or change goals of care…requires ongoing discussions…reflections…perhaps some involvement from the GP. (ICL)I think just their reassurance…there is nothing physically they can do…they just reassure you…. That you are doing the right thing, more than anything, because sometimes you do doubt yourself (NH2 Family member)Residents and next of kin, loved ones, they don't ever have the opportunity to talk about what to expect towards the end of um you know; the spectrum of dementia, it always comes as a surprise to them… I think with [ICL’s] involvement there was an opportunity for them to have someone to talk about that to them…I think she also gave them supplementary information in a written form for them to then go away … to digest… and then giving them a further opportunity to come back with any other concerns. (NH1 Geriatrician)
I said…I had spoken to the son… that they wanted care to be provided in the care home and DNR. She said that was no good unless they had it signed. I thought that this was some progress…you can’t rush or push people to complete these… confronting plans… (ICL)One nurse said that they had discussed end of life with a couple of family members but that they had refused to sign any ACP or DNR. She seemed to imply that because there was nothing documented that it hadn’t really been worth having the discussion. (ICL)
in the first scenario… the nurse was trying to talk about end-of-life care and DNRs while the ‘family member’ was talking about (as per the scenario) her concerns about the care at the care home…the nurse did not pick up and try to alleviate the family member’s concerns about the quality of care… We talked about how if she had talked more about comfort care …what was happening to the resident today and that that would have addressed the concerns that the family member was raising.(ICL)
She cried at one stage… She felt that dementia was a horrible disease and hated what it did to her loving gentle husband who was now aggressive and agitated (ICL).
I find that the nurses tend to feel they don't really know how to start the conversation. It is often a very difficult conversation for them to initiate and then even if they can initiate it is then the depth of that discussion is often lacking (NH1 Geriatrician)Staff need help talking to relatives…language is a problem…none of them are English born… … haven’t got… subtleties of language, when a conversation is… difficult… it can come over a bit more blunt when … 'do you want your relatives to go to hospital… to be resuscitated or not?' They don't know how to develop those conversations. (NH1 Palliative care nurse)
Providing time and space for sensitive discussions
It is very difficult having a conversation in the main lounge with all the other residents… family members and staff in the room. (ICL)
I think takes time; because it's not one that you can do in one sitting. That often you need to build the relationship and then go it step by step. And I think that’s where [ICL] role is quite unique in that she can come back and have a second conversation, a third conversation and a fourth if that is required (NH1 Geriatrician)
An independent healthcare professional or team with responsibility for EOL discussions
… helpful to have someone independent of the care home – an independent voice where… family can feel more open about the care …not feel that motives of the care home are influencing the discussion. (ICL)They [family] feel comfortable discussing… in an environment where they don't feel they have to actually make a decision, …I think in hospitals…when they speak to doctors, they… feel that we are trying to make them say things they might not necessarily want to say…we talk about the best interest of the patient…she is the neutral person they tend to feel a bit more comfortable having her there. (GP)
We feel it’s helpful because she has got a different way of looking at the situation. The areas where we don’t normally see… it will help and improve in the care of these service users (NH1 Nurse and Deputy Manager)