Less than helpful

All these actions are less than helpful:

  • not checking out patient/carer understanding
  • lack of information available to teams regarding what has been said and discussed
  • patient chooses to come alone (but acknowledge that this is patient choice – however, he may not appreciate the seriousness of the situation)
  • multiple phone calls from the 3 children about what is happening
  • staff not aware of potential family conflict and how this may affect the patient
  • staff not aware of patient understanding
  • patient not clear about impending deterioration
  • ignoring the needs of the relatives

Less than helpful actions can lead to:

Consequences for patients carers

  • false expectations and false hope
  • patient/carer not knowing what is happening
  • lack of understanding can lead to unnecessary distress for families to significant changes e.g. careful consideration regarding removal of tumbler and jug of water in a patient's room when they are no longer able to drink without any explanation of the reduced need for fluid or inability to swallow – this must be managed
  • lost opportunities for important conversations - four most common things said at the very end of life are I love you, thank you, I’m sorry, I forgive you. We have no right to deprive people of the opportunity to have these intimate conversations that are helpful in supporting the bereavement process. A helpful hint is for staff to say during the conversation informing relatives that their loved one is dying – “if you have something really important that you want to say, I would say it now” but there is also the scenario where forgiveness is not possible and people will die with very complex emotional struggles that cannot be resolved.

Consequences for staff

  • teams not being aware of the individual plan, mixed messages from staff
  • communication barriers – avoidance of initiating conversations
  • staff feeling they have let the patient/family down bringing on low morale
  • complaints

These are the kind of comments that might be heard when there has been less than helpful communication:

Relatives

No-one said he was dying

I saw the deterioration every day myself but no-one said anything

Looking back I should have known

If only we had known he was dying

I did not know dying was like that

Healthcare Assistant

I don’t get a report – so I don’t know when I go in to the room that the person is dying, I just have to work it out myself

I never know what the family know (we need to encourage staff to ask)

I don’t know what to say

Registered nurse

I don’t know what to say sometimes, especially when trying to tell the family their relative is actually dying – how do you start that?

I should really shadow the Palliative Care CNS – but I never get the time

I’m so glad I spent some time with the family today - they seem to understand he is dying now

District Nurse

I wasn’t informed of the discharge – I had no idea how he was and that they weren’t coping – if only I had known

We just can’t get overnight help

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