Stroke Training and Awareness Resources (STARs)

Communication with families and patients when the stroke patient is close to death

General Points about discussions about ‘goals of care’

In the ‘first few hours’ scenario, we explored how to have conversations with families whose loved ones were going to die within a few hours of a stroke. Often though patients deteriorate slowly after stroke and the dying process can be more prolonged. Sometimes it is difficult to be certain whether a patient is dying – recent NICE guidelines provide some useful guidance.
In this case scenario the team is almost certain that the person will die within the next few days:
  • Note that the term ‘Withdrawing treatment’ can be perceived by family as ‘withdrawing care’. So it’s best to avoid using the term ‘withdrawal of treatment’ but instead use the phrase such as ‘providing care and stopping unnecessary treatments that aren’t working’. This might include stopping artificial feeding (which is considered a ‘treatment’) stopping intravenous fluids, stopping life prolonging treatments especially when they are distressing for the patient, investigations e.g. blood tests, radiological tests, secondary prevention of stroke.
  • Conversations about the possibility of stopping treatments should ideally have begun at the time when the treatment was started and may have adopted time limited interventions with agreed criteria for stopping treatments.
  • Involve the patient if possible and all relevant family members with clear dissemination strategies to other members of the family who might not be present and to other members of the team.
  • Could be a shared decision with patient and family.
  • It is important to establish whether a family member has a legal role in decision making e.g. Power of Attorney; if the patient cannot communicate.
  • Should cover future plans for symptom control.
  • Should be explicit about which treatments will and will not be given. Acknowledge that all decisions will be reviewed to determine if still appropriate.
  • You should be explicit about whether or not you will continue to do observations. If you stop observations the family may feel that you are no longer monitoring the patient.
  • Patients’ currently or previously expressed wishes should be taken into account.
  • Second opinions may be sought and can be useful.
  • Should include a discussion about preferred place of dying e.g. hospital or home or nursing home-staff may need to bring this up as families are often reticent about asking. Staff should explain clearly if they feel the person is too ill to be moved even if the family would have preferred care at home.

Page last reviewed: 17 Apr 2020