PALLIATIVE CARE Being Prepared
Sheridan Coker, Deputy Clinical Lead Admiral Nurse at Dementia UK, discusses how advance care planning can help people with dementia, as well as their family and care givers, to make difficult decisions around end-of-life care.
Dementia is a progressive neurological condition so it’s essential that people living with the condition are given the opportunity to discuss their future wishes as early as possible into diagnosis in order to offer the palliative care that suits them best.
Advance care planning [ACP] is a formal process that enables people with the mental capacity to make clear decisions about their future care, helping family, friends and healthcare professionals ensure they make difficult decisions with confidence. ACP can aid the provision of good person-centred care, which supports maximised comfort and quality of life for the person living with advanced dementia and their family, particularly towards the end of life. When capacity is reduced, end-of-life and palliative care choices are difficult to make, adding pressure to families and carers who are already in a difficult situation. Having an ACP ensures that a person living with dementia can receive treatment and care according to their individual values and preferences, even when they can no longer express them.
ADVANCED CARE PLANNING
Advance statements can relate to medical treatment or social aspects of care and are not legally binding, but should always be considered when decisions are made about a patient aſter they lose capacity. An advance statement allows people to record the care they would want in the future, and can cover any aspect of care including:
• Preferred place of care, for example at home or in a hospice. • Daily routine, such as sleep/wake cycle, meal times and so on.
• Religious beliefs, cultural needs, values and how these affect care provision.
• Anything a person would not want to happen to them.
An advance statement will only be used to guide decisions if mental capacity is lacking to make or communicate a decision.
REFUSING TREATMENT Advance decisions to refuse treatment are legally binding documents which allow people to refuse specific treatment if they lose capacity. People can refuse medical and nursing treatment in advance, but cannot decline basic care such as the offer of food and drink by mouth.
Verbal wishes to refuse treatments which do not sustain life can also be recorded in patient case notes and records. An advanced decision to refuse treatment only comes into effect once a person loses the capacity to make that specific decision. If you wish to make an advance decision to refuse treatment it is advisable to discuss this with a health professional who is aware of an individual’s medical history, such as a GP.
LASTING POWER OF ATTORNEY [LPA] LPAs allow people to nominate someone to whom they want
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to give decision-making powers if they lose capacity. There are two types of decision: ‘property and financial affairs’ and ‘health and welfare’. More than one person can be nominated, or different people can be nominated for different decisions. An attorney must:
• Follow any instructions the donor included in the LPA. • Consider any preferences the donor included in the LPA. • Help the donor make their own decisions as much as they can. • Make any decisions in the donor’s best interests. • Respect their human and civil rights.
Advance care planning is a key factor in good end-of-life and palliative care, as it informs all stakeholders – family and professionals – involved in the care of the person of their individual values and preferences, when they are no longer to communicate or convey their preferences verbally.
ACP enables a more person-centred approach, particularly towards the more advanced stages of dementia.
ACP can reduce the pressure on family carers when difficult decisions are required, as many families don’t feel prepared when it comes to making decisions towards the advanced stages of dementia, and making decisions in these circumstances can cause further unnecessary stress during difficult times.
Without an Advanced Directive to Refuse Treatment people with advanced dementia are at risk of receiving invasive, distressing, and burdensome interventions towards end of life.
www.dementiauk.org/get-support/legal-and-financial-information/advance-care-planning www.dementiauk.org www.tomorrowscare.co.uk
Research indicates a correlation between a written ACP and quality of care, particularly towards end of life, and there’s also an indication that ACP can help to minimise hospital admissions and increase use of community-based structures of care, ensuring maximum comfort within the persons preferred place of care.
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