How should I discuss not attempting CPR with people who have dementia?

Care planning discussions about the wishes of people with dementia, including whether to attempt cardiopulmonary resuscitation, should be proactive due to its inevitable progression

Do not attempt cardiopulmonary resuscitation (DNACPR) is a decision not to attempt cardiopulmonary resuscitation (CPR) (Resuscitation Council (UK) 2019). If cardiac or respiratory arrest is an expected part of the dying process and CPR would be unsuccessful, then a DNACPR decision is made and recorded in advance (Resuscitation Council (UK) 2019).

Dementia is a global health concern, a progressive neurodegenerative condition characterised by a gradual decline in cognitive abilities and an accompanying increase in health needs (Lamahewa et al 2018). Dementia itself can be the cause of death (Dening et al 2019) and studies have reported median survival times of between three and ten years (van der Steen et al 2014). Dementia is the leading cause of death in England and Wales (Office for National Statistics 2019).

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Many people with advanced dementia lack the capacity to make decisions about their care and treatment (Amador et al 2019). Health and social care professionals lack confidence in having conversations about end of life decisions with people who have dementia (Lamahewa et al 2018).

Conversations about advance care planning require excellent communication skills, sensitivity and diplomacy

However, decisions including DNACPR sometimes have to be made by family members, surrogate decision-makers, or health and social care professionals, supported by the Mental Capacity Act 2005 in England and Wales (Lamahewa et al 2018) and equivalent legislation in Scotland and Northern Ireland.

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Advance care planning discussions should be proactive, continuous and early because of the inevitable progression of dementia (van der Steen et al 2014) and subsequent cognitive and functional deterioration.

Discussions and decisions about DNACPR are important parts of these conversations, especially as cognitive problems associated with dementia complicate decision-making (van der Steen et al 2014). Conversations about advance care planning require excellent communication skills, sensitivity and diplomacy (Scates and Thompson 2017).

There are misunderstandings about the potential success of CPR as it is depicted in televised medical dramas

This can be challenging not only because of progressive cognitive decline, but also misunderstandings about the potential success of CPR as it is depicted in televised medical dramas, for example (Colwill et al 2018).

• RELATED: Respecting the ethical principle of autonomy in end of life care decisions

Acknowledging the importance of having DNACPR discussions with people living with dementia, the following might help:

• Start conversations early as advance care planning is concerned with imagining and contemplating your future death (Russell 2019). This gives people time to think, discuss and decide about their wishes and choices before their cognitive function varies or declines.
• Consider an advance decision to refuse treatment or to nominate a surrogate decision-maker, for example by granting power of attorney.
• Be thoughtful in how you approach these conversations and the language you use – ask: ‘What is important to you? What would you not want to happen should you become acutely unwell or sick enough to die?’ (Mannix 2018).
• Be honest about the possible trauma and probable outcomes of CPR and allowing a natural death.
• Be clear that this decision does not affect any other healthcare decisions they make.

Practice Question is written by members of the Nurses and AHPs Council of the British Geriatrics Society

Find out more about becoming a member of the Nurses and AHPs Council of the British Geriatrics Society

Caroline Scates is interim lead for professional and practice development at Dementia UK, email Caroline.Scates@dementiauk.org

References

• Amador S, Sampson EL, Goodman C et al (2019) A systematic review and critical appraisal of quality indicators to assess optimal palliative care for older people with dementia. Palliative Medicine. 33, 4, 415-429. doi: 10.1177/0269216319834227
• Colwill M, Somerville C, Lindberg E et al (2018) Cardiopulmonary resuscitation on television: are we miseducating the public? Postgraduate Medical Journal. 94, 1108, 71-75. doi: 10.1136/postgradmedj-2017-135122
• Dening KH, Sampson EL, De Vries K (2019) Advance care planning in dementia: recommendations for healthcare professionals. Palliative Care and Social Practice: Research and Treatment. 12. doi: 10.1177/1178224219826579
• Lamahewa K, Mathew R, Iliffe S et al (2018) A qualitative study exploring the difficulties influencing decision making at the end of life for people with dementia. Health Expectations. 21, 1, 118-127. doi: 10.1111/hex.12593
• Mannix K (2018) With the End in Mind: How to Live and Die Well. William Collins, London
• Office for National Statistics (2019) Deaths Registered in England and Wales: 2018
• Resuscitation Council (UK) (2019) Frequently Asked Questions: Do Not Attempt CPR (DNACPR)
• Russell S (2019) We need to talk about advance care planning. Lancet Commission on the Value of Death
• Scates C, Thompson R (2017) Advance care planning. Nursing Older People. 29, 4, 19
• van der Steen JT, Radbruch L, Hertogh CM et al (2014) White paper defining optimal palliative care in older people with dementia: a Delphi study and recommendations from the European Association for Palliative Care. Palliative Medicine. 28, 3, 197-209. doi: 10.1177/0269216313493685