Communication with family, friends and carers
Families, friends and carers play a crucial role in supporting people at the end of life. To do this effectively, they need to receive clear and timely communication. They need to be adequately informed involved in discussions about care.
Where communication breaks down, they are left to take on a greater role in coordinating care at a time when they are already struggling to come to terms with their loved one dying.
One complainant told us about the huge sense of responsibility she felt in her role as next of kin for her close friend:
‘I was the person that she [complainant’s friend] had put her trust and faith in and, given that role and responsibility to. I knew that this was the most important thing I would and ever could do for her. I wasn’t going to fail in it.’
A common theme in complaints is that families were not told clearly or early enough that their loved one was deteriorating or approaching the end of life, leaving them unprepared for what followed.
Where there is a communication breakdown with families, it compounds grief and leaves a lasting impact on those left behind. One complainant spoke to us about her mother’s final days of life, and how the communication failings affected their family:
‘I couldn’t say it was a memorable ending. And the issue comes because of the lack of communication. We were quite realistic that she was coming to the end of her life. What you’re wanting as a family is for it to be a peaceful time where the family can spend some quality time and talk about memories. I don’t have that. And I can’t take away those scars, those memories live on with me for life.’
A lack of clear information
In some cases, families reported being given partial or contradictory information about diagnosis, treatment or discharge plans. As a result, families did not understand what to expect and were more likely to perceive care as unsafe or inappropriate, even when there were no clinical failings:
‘I just needed to talk to someone… anyone that could inform me about what was going on. It doesn’t cost anything to talk.’
We found that in some cases a lack of understanding about the implications of active treatment left families feeling they had missed the opportunity to explore different care options with their loved one. One complainant described the consequence of not having a full explanation of what active treatment would mean for her mother:
‘The consultant asked us, “has nobody explained the implications of having the surgery, because it can be extremely painful”. We should have been told earlier so we could have sat with mum and said, do you really want to go through this? Is it worth going through that pain or is the best pathway forward palliative care? Had we had that option before, not waiting for that surgical team, we could have got her into a care home that does palliative care, or got her home with Macmillan support.’
Compassion and empathy
Families described times where they felt dismissed or not properly listened to, particularly at emotionally difficult moments when empathy would have made a significant difference:
‘There were comments around the fact that I was a nuisance… It was obvious anyway, that I was not welcome.’
Families told us that even if staff could not meet their wishes for their loved one, compassionate communication to explain this and acknowledge their situation would have made them feel much more supported.
Even when their overall experience of communication had been poor, families remembered well the staff who showed them kindness and empathy at a time when they needed it most. A complainant told us about a memorable conversation she had with a cancer consultant caring for her mother:
‘She showed empathy and spent time explaining to us… I couldn’t have asked any more from her – it was her understanding, her empathy and she was thinking about my mother and the best way forward for her.’
Another complainant told us about a nurse who made her feel reassured:
‘I did notice there was one particular nurse who seemed caring, who seemed as though he knew what was happening. I used to breathe a sigh of relief when he was there.’
Complainants recognised the challenging environment healthcare professionals work in and acknowledged that excellent practice exists. They identified consistency as the real issue to tackle:
‘There’s lots of people working very hard to do a very good job and they shouldn’t be undermined by instances of where things fall short. We just need to close that gap.’
NACEL’s Good Practice Compendium
The National Audit of Care at the End of Life (NACEL) is a national comparative audit of the quality and outcomes of care in the final admission before death. It covers acute hospitals, community hospitals and mental health inpatient providers in England, Wales and Jersey, and looks at the experience of the dying person and those close to them.
The Good Practice Compendium brings together examples of innovation and improvement in end of life care, shared by hospitals through NACEL. It showcases initiatives developed by local teams to address common challenges in end of life care, including communication.
Example: Dorset County Hospital NHS Foundation Trust - Dorset County Hospital
The hospital introduced several initiatives aimed at improving communication with patients at the end of life and with those close to them.
To provide more personalised and patient-centred communication, the hospital embedded a simple question around ‘what matters most to you now/in the future?’into training and practice. It introduced an End of Life Support Worker role to provide ward-based and classroom teaching, helping staff build confidence in recognising when patients are dying and in communicating effectively.
As a result, patients known to the palliative care team now routinely have conversations about what is most important to them, staff training has doubled, and communication is more consistent, coordinated and focused on patients and families.