Section 3
3.2 Develop knowledge about the progression of dementia and key triggers for end-of-life care discussion “One of the key challenges for managers and staff is knowing when and how to open a discussion with individuals about what they would wish for as they near the end of their life” (41) Before healthcare staff enter into discussions relating to end-of-life care, it is important that they have a good understanding of the clinical progression of dementia as well as being informed of the events or transitions that can prompt or trigger end-of-life discussions (42). Having this knowledge will enable staff to anticipate and be prepared for end-of-life care discussions as part of their routine care planning and to manage informal discussions appropriately and sensitively. Sensitive communication is needed to guide the person and family carers through the potential scenarios which can arise as dementia progresses and where particular decisions may need to be made to ensure the optimum comfort for the person (17) (also see resources section 6.1 for information on the progression of dementia). Some of the milestones which may act as triggers or prompts to facilitate discussions about future and end-of-life care with a person with dementia are as follows:
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
3.3 Plan future care to optimise comfort
“People with early dementia are interested in participating in advance care planning discussions.....so we should not be scared of asking people with dementia their views” (44) Having early and repeated discussions allows the person with dementia, their family and the team to plan their future care and to ensure that comfort is prioritised throughout the persons journey with dementia. Medical and clinical interventions can help manage many of the symptoms which commonly arise with dementia such as pain, agitation and swallowing difficulties. As the person’s dementia progresses, it is important that the healthcare team discuss the changing needs of the person and explain to the person and their family that interventions should primarily focus on maximizing the person’s comfort (17,42). Overly burdensome treatments such as transfer to hospital, the use of
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Facilitating discussions on future and end-of-life care with a person with dementia
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