Key messages:

  • timely, honest/open communication that is patient/carer led is essential –
  • communication between teams is crucial to ensure seamless care
  • assessment of needs in physical, psychological, social and spiritual domains
  • diagnosing dying highly complex
  • have knowledge of the patients condition
  • have an awareness of family dynamics
  • people can change their minds so decisions need to be revisited
  • adopt a goal setting approach to shared decision making
  • look after yourself! 
What is helpful:
using a model such as SPIKES
patient led interactions
anticipation of needs and planning accordingly
open and honest communication about what is happening and what to expect- advance care planning
good documented summary /synopsis of conversations
knowing what and who is important to the patient
understanding the potential for complexity around communication – try to identify a key person to share information with
ask patient if they want to bring someone to the clinics/ appointments
timely referral to other services
facilitate shared decision making
assessment and care planning
using a structured framework for assessment  and care planning – use of tools such as GSF,SPICT, Palliative Performance Scale
adopting  a consistent approach when communicating between teams
be honest if you don’t know the answer but let the person know you will find out the information for them
checking how the family are when sitting with the dying patient – providing drinks/place for quiet time/comfortable chair
checking out previous experience of death/ bereavement
explain the process of dying
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- false hope
  • patient/carer not knowing what is happening
  • lack of understanding can lead to unnecessary distress for families to significant changes eg careful consideration regarding removal of tumbler and jug of water in a patients room when they are no longer able to drink without any explanation of the reduced need for fluid or inability to swallow – this must b e managed with
  • lost opportunities for important conversations- 4 most common things said at the very end of life – 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- helpful hint 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-low morale
  • complaints.

useful quotes to include:

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

HCA

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…

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

DN

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

We just can’t get overnight help

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