End of Life Care in Frailty: Advance Care Planning
Advance care planning is a process that supports adults at any age or stage of health in understanding and sharing their personal values, life goals, and preferences regarding future medical care. The goal of advance care planning is to help ensure that people receive medical care that is consistent with [them].”- International Consensus Definition of Advance Care Planning1
Effective advance care planning (ACP) is practical and fluid to accommodate and anticipate a person’s future. It can be used as an opportunity to lay out values, beliefs and preferences relating to daily life (such as the immediate environment, or how the person wishes to be dressed or addressed), right through to anticipated situations in which a person may wish to specify very explicitly the limits of treatments intended to sustain life. Typical examples at the potential and actual end of life range from antibiotics and intravenous fluids, to organ support, clinically assisted nutrition and hydration, and attempts at cardiopulmonary resuscitation. There is no single critical determinant of, or recipe for, advance care planning or recording a person’s preferences: they are the outcome of an ecology of personhood - the system and interrelationships of the individual, their physical constraints and illnesses, their relationships and social/religious/cultural sensibilities.
ACP in the context of prognostic uncertainty
One perceived barrier to ACP is prognostic uncertainty. ACP is not just about the end of life: to be most effective and helpful to the person and their clinicians, the process needs to begin as early as possible and to develop as it is reviewed, refined and focused by the shape and characteristics of a person’s frailty or how their deterioration unfolds. One helpful way to lay its potential scope is to ask two questions:
- What would I want out of my life if I had a thousand days left to live?
- What would I want to complete if I had a hundred days to live?
Triggers to start ACP include a change in the person’s state of health or personal circumstances, such as the death of a spouse or a move into long-term care. Catalysts may be sudden events such as a fracture, or a step change, such as from a fall that leads to fear of falling and loss of independence. An opener may be “if the same happens, would you want to do this again?” Starting this conversation is important as it restores a sense of control and self-determination when a person may feel disempowered or undignified by events. Being honest and open builds the trust that facilitates these conversations.
People must have information about prognosis, its uncertainty and the limits of medical intervention without which they cannot make informed, realistic choices. Just asking “if your heart were to stop beating would you want CPR?” is not giving someone a valid choice. Clinicians undertaking ACP must be able to recognise frailty, explain how it affects presentation of and recovery from illness, and the impact and burdens of intensive medical care. This knowledge both enables realistic ACP and allows simultaneous parallel planning for recovery and deterioration in health.
Early discussion with a patient and their family as the end of life approaches restores personhood as it explores someone’s physical, psychological, social, spiritual and cultural self and, where appropriate, the environmental needs and wishes they have. The conversation must be driven by what matters to the person and is best done over several sessions.
A clinician having a conversation with someone whose relative or loved one lacks capacity must understand and distinguish between the wishes of the person they are talking to, and what the person who lacks capacity would want for him/herself. This can be challenging when family are finding it difficult to accept that death is approaching and it requires compassion, sensitivity, trust and time to help everyone come to terms with the situation.
The outcome of an advance care planning conversation maybe nothing, a specific advance decision to refuse treatment* (ADRT, or living will), a person choosing to delegate decision making to one or more close family members (a Lasting Power of Attorney**) or a more formal ACP.
The ideal ACP gives the professional a sense of the person’s values and beliefs, but also helps to guide action in particular circumstances (e.g. infection, stroke, fall and hip pain, or cardiac arrest), it is easy to update, and is accessible to all professionals who might need to view it across care settings. Avoid “consider admission to hospital for potentially reversible conditions” as this is very difficult to assess in an emergency. Try to be specific.
Examples of advance care plans include Coordinate My Care, ReSPECT, PEACE, Preferred priorities of care (see Resources).
*Lasting power of attorney for health and welfare (LPA) - an individual P chooses to donate authority to specified individual(s) Q to make decisions on their behalf should they lose capacity. If specifically stated, these decisions can include refusal of life saving treatments, however Q does not gain the right to demand treatments which clinicians do not feel are clinically indicated, on behalf of P. LPAs must be registered with the Office of the Public Guardian (OPG).
**Advance decision to refuse treatment - alternately P may choose to make an ADRT. In order to refuse life sustaining/prolonging treatment the ADRT must be in writing and witnessed. In order to be valid, it must have been written when P had capacity for the decision and in order to be applicable it should specify the circumstances in which it should apply. Patients should be advised to seek medical advice to ensure these criteria are met.
- Sudore RL, Lum HD, You JJ, et al. Defining Advance Care Planning for Adults: A Consensus Definition From a Multidisciplinary Delphi Panel. J Pain Symptom Manage. 2017 May;53(5):821-832.e1. doi: 10.1016/j.jpainsymman.2016.12.331.
- Advance care planning
- The Mental Capacity Act 2005
- Serious illness conversation training programme
- NICE Guidelines on ACP
- VA Jackson, et al. The Cultivation of Prognostic Awareness Through the Provision of Early Palliative Care in the Ambulatory Setting: A Communication Guide.
- ACP defined in a white paper by the European Association for Palliative Care (EAPC)
- Coordinate My Care
- Advance care planning for people with Dementia
- Preferred Priorities of Care