Areas for guidance
4.4 Hosting formal family meetings
Formal meetings which address future and end-of-life care can be prompted in a number of different ways, including a request from the person or their family, a change in a person’s health status, or where a person has survived a critical healthcare episode(15). It is important to get the person’s consent before hosting a family meeting. The following is a list of possible prompts or triggers for formal meetings to discuss end-of-life care.
TRANSITION POINTS
HEALTHCARE EVENTS • Deterioration or decline in a person’s condition • Person presenting with complex symptoms • Person presenting with difficulty with nutrition and hydration • Decreasing response to antibiotics • Consideration of the need for further medical investigations or treatments • Discussion about attempting cardiopulmonary resuscitation (5,8,42,43)
• Time of diagnosis • When the person is doing their Enduring Power of Attorney • Change of care setting: transfer to an acute hospital/ residential care setting etc • Care plan review or referral for homecare package
The meetings would generally involve the person with dementia and/or representatives of their family, and would be led by a senior staff member who has the clinical expertise to answer the medical questions which commonly arise when discussing end-of-life care with people who have dementia (15,72). It may be of benefit to have an advocate present for this discussion where they have been involved with the person.
The purpose of formal family meetings is:
• To provide an opportunity to explore the person’s goals of care and preferences for their future and end-of-life care. • To give clear and consistent information to the person on their current and future health care. • To clarify how the person’s care preferences will inform future medical and clinical decisions. • To clarify the decision making responsibility of the medical team, particularly in instances where the person is not in a position to communicate their wishes or preferences or may lack capacity. In summary, formal meetings are designed to enable clear and open conversations about future and end-of-life care and are a means of identifying and recording concerns, wishes, preferences and responsibilities so that everybody may be aware of these if/when it is necessary. Whilst these discussions can be beneficial, they can very be daunting for the person with dementia and their families, and staff are also likely to be apprehensive (36). Consequently good preparation for these meetings is vital. It must be remembered that the extent that a person wishes to participate must be respected, and family participation is at the behest of the person with dementia (15,72).
Facilitating discussions on future and end-of-life care with a person with dementia
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