Five key considerations to inform good practice
some medications, use of restraints, artificial nutrition or hydration and attempting cardiopulmonary resuscitation need to be considered in light of each person’s unique needs and set of circumstances (28,30). Such complex clinical decisions will be made by senior clinicians who should consider the will and preferences of the person when determining the most appropriate treatment and future care provided to the individual. It is important that the language used by senior clinicians does not transfer responsibility onto the person with dementia or their family member for the consequences of the decision that has been made. Pain management, advance care planning and advance healthcare directives, nutrition and hydration and ethical decision making will be covered in detail in separate guidance documents in this series.
3.4 Promote personhood throughout the person’s journey
“We must never lose sight of the individual who must be afforded sufficient choice and the opportunity to live well with dementia and to be treated with dignity, kindness and respect” (10) Being treated with compassion, kindness, care and respect is core to our humanity and the delivery of good end-of-life care (40). Good end-of-life care involves responding to and meeting a person’s physical, social, spiritual and psychological needs. The person with dementia’s values, will and preferences should be honoured and respected by staff throughout their journey with dementia. It is never too late to find out about a person’s wishes in relation to their end-of-life care. People with advanced dementia can and do communicate their preferences about what is important to them (45). It is up to staff to recognise a person’s communication attempts, validate and respond to them and share that information with the healthcare team. Relatives are often well placed to provide valuable information in aiding healthcare staff understand what is most important to their family member who has dementia. However, it is important to note that in terms of making medical or legal decisions, no adult has a legal right to give or withhold consent for another adult unless they have specific legal authority to do so (46). In conclusion, staff need to value people with dementia as people who have a unique history, values and preferences and support the person to maintain the essence of their personhood at all stages of their journey with dementia.
3.5 Record future wishes when they are expressed
“Discussions about end-of-life issues can be conceptualised as a process of ongoing conversations over time, rather than a single discussion.” (47) In the instance that a person has clearly expressed their future wishes in any situation or context, it is important that there is a formal record of these wishes kept (42), and that relevant health care staff are made aware of this formal record. The person should receive regular prompts to review and update their record and it should be easily accessible to all staff who are involved in the person’s care (48). While additional details may need to be recorded in the person’s medical and nursing notes, it is beneficial for there to be a single document which can summarise what is important to the person when planning their future and end-of-life care. If this document relates to decisions regarding certain treatments (e.g. attempting cardiopulmonary resuscitation), this form should be signed and completed by a doctor and reviewed on a regular basis. Guidance on hosting formal family meetings and examples of documents used in Ireland for this purpose are given in section 4. Advance care planning and advance healthcare directives will be covered in a subsequent guidance document and this will be developed following publication of the Assisted Decision Making (Capacity) Bill (37).
Facilitating discussions on future and end-of-life care with a person with dementia
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