End of Life Care in Frailty: Last days of life

Identifying that someone is in the last hours or days of life is important in order to minimise unnecessary investigations and to offer appropriate communication to patients and families. With no bedside test to confirm or refute this, it is frequently laden with uncertainty. Facilitating an end of life care plan is a holistic, patient-centred process which requires great skills, including confidence in identifying transitions in care, an ability to communicate ‘uncertainty’ in difficult circumstances and proficiency with medical ethics and law.

There are signs and symptoms common to the dying process and recognition of these patterns can be helpful in medical decision making (see Table): ^1,2

Decision-making and uncertainty

The difficulty is that there is no set of rules or ‘guidebook’ and so clinical guidelines may be difficult to apply given the variability in presentation and needs of older people at the end of life. Medical decision making in uncertain circumstances often requires a nuanced approach. ‘Heuristic’ decision making is one such approach which has been tested in the context of the following key topics; eating/swallowing, agitation/restlessness, withdrawing life-sustaining treatment and routine care. For example, regularly turning to relieve pressure areas is arguably more distressing in the last hours of life.³

Routine care plans can be difficult to deviate from for fear of causing harm, despite an ‘intuition’ that (for example) turning someone in the last hour of their life may be inappropriate. Heuristic decision making is an ‘intuitive, rule-of-thumb’ process of thinking through a given problem that requires immediate attention; it allows practitioners to argue the pros and cons of a decision relating to care, in a simplistic framework that focuses on the information at hand. It has been shown to work well when rapid decision making is required in sub-optimal circumstances (such as when collateral history is unavailable). The evidence suggests that in end of life scenarios where this is the case, deviating from guidelines can positively influence care plans, while working within a transparent framework.

Clearly this does not obviate the need for specialist involvement to manage complex symptoms, and those requiring review over time. This is often the case in the difficult area of hydration and nutrition. An inability to safely eat and drink necessitates a medical review to look for reversible causes, but if no reversible cause is found (in advanced dementia, for example) the need to discuss parenteral options may arise. NICE advocates for a patient-specific approach to hydration, weighing the risk-benefits, and including a trial period of parenteral fluid in appropriate cases.⁴

This approach is applicable across symptoms, allowing simple unmet needs (toileting, positioning) to be recognised and easily and appropriately corrected.

‘Parallel care’ which delivers active interventions alongside palliative symptom control may be entirely appropriate. This is particularly important where a person may have a hypoactive delirium. It is also a common dilemma in stroke care, where outcomes are so variable. In such instances, time to monitor and reassess response to treatment is valuable. In the absence of an Advance Care Plan that dictates otherwise, a presumption to ‘diagnose-treat’ is defensible. For example, cannulation for antibiotic administration and parenteral fluids may be appropriate, until a time when it can be seen that they are either causing harm, or not working. Absolute cut-offs in time are often less helpful than an individualised approach that incorporates joint decision making and close communication with family and carers.

From a medical perspective, end of life care should be the bar by which the delivery of other care is measured; great attention to detail is required monitoring for signs of change, both improvement and deterioration, often based on bedside examination alone. Clinical acumen and experience cannot be underestimated. Senior oversight is therefore of great significance in the last hours or days of life, to uphold high levels of clinical responsiveness and ensure advanced communication with loved ones is achieved, but equally, to ensure opportunities for mentorship and learning for junior colleagues and other team members are not missed.

Communication

Following the death of a loved one, formal complaints most often arise due to poor communication and perceptions of the delivery of care. Reinforcing the importance of communication cannot be under-estimated. Other qualities such as care and compassion, and practitioner responsibilities such as honesty are as highly relevant.⁵ Communication styles will vary, but best models of care exist. Shared decision making is a cornerstone of patient centredness. It can be difficult to execute in reality, and should be an area for ongoing reflective practice and training. Anecdotally, DNACPR discussions are an example of how engagement with very finite, difficult decisions is often received positively by older people who welcome the opportunity to discuss their care and their future. In instances where an individual does not have capacity to make serious decisions about their healthcare, refer to the Mental Capacity Act, and involve family and carers in decision making - although even when a person retains capacity, it is appropriate to involve those important to them.

With only one chance to get this right, open and honest communication with shared decision-making involving appropriately experienced personnel is essential.

References

1. Diagnosing Dying; symptoms and signs of End Stage Disease.
2. Benedetti et al. Support Care Cancer (2013) 21; 1509-1517. International Palliative care Experts’ View on Phenomena Indicating the Last Hours and Days of Life.
3. Davies et al. BMC. Palliative Care (2016) 15;68. A Co-Design process Developing Heuristics for Practitioners providing End of Life Care for People with Dementia.
4. Care of Dying Adults in the Last Days of Life. NICE Published December 2015.
5. Guiding practitioners through end of life care for people with dementia: The use of heurisitics. Plos (14 November 2018). Nathan Davies et al.https://doi.org/10.1371/journal.pone.0206422
6. NHS England. The 6C’s. www.england.nhs.uk. https://www.england.nhs.uk/6cs/wp-content/uploads/sites/25/2015/03/introducing-the-6cs.pdf