Many families may be surprised when a terminally ill family member starts to behave out of character, becomes restless, agitated, paranoid or confused.
The extent of the behavioural change naturally varies from patient to patient, but when moods change or personalities seem to alter, family members may be completely bewildered and feel helpless, not knowing what to do (1).
Professionals may very well feel the same way when tasked with the care of a patient who is either suffering from pre-existing cognitive impairment, such as dementia, or one such as psychosis or delirium, which appears as a symptom of their advanced illness.
It is common for patients with advanced illness to experience confusion and terminal restlessness or agitation (which can be defined as agitated delirium with cognitive impairment). Estimates are that between 25% and 85% of patients who are dying experience symptoms associated with terminal agitation or restlessness before death (2).
Despite how often this occurs in patients, how confident are professionals in dealing with the behavioural problems attached to and associated with delirium, dementia and other cognitive problems?
Delirium itself often presents difficulties in its management, but especially in a patient who is palliative and approaching the end of their life. The complexities of their already existing disease, coupled with delirium in whatever environment they are being nursed, can pose a variety of challenges. Confusion often accompanies delirium and if the patient has dementia, this can pose further complexities.
In 2010, about 35.6 million people were living with dementia, and this number is set to almost double by 2030. Because no cure is foreseen in the near future, many people will die with, or from dementia.
Traditionally clinicians and researchers within the palliative care community have focused on care for advanced-stage cancer patients. For these patients, early access to palliative care improves quality of life and may even prolong life.
Such high-quality evidence is not yet available for palliative care in dementia, although dementia care at the end of life is increasingly being studied (3).
So if delirium, agitation and confusion are common symptoms for palliative patients, then as clinicians, we should be well versed in how to manage these symptoms.
Within palliative and end of life care we aim to deliver holistic care which includes care of the mind and spirit as well as the body. Yet colleagues have expressed to me the difficulties in managing delirium and confusion in this particular group of patients.
Particularly complex cases have caused some uncertainty and anxiety about the best course of action and what a treatment plan should include. They want to be as well versed in this symptom as possible as it can be extremely distressing not only for the patient but for the patient’s family too. They want to learn more about the ways that delirium and confusion can be managed by non-pharmacological as well as pharmacological means.
These discussions were the main driving force for the forthcoming national conference facilitated by Wigan and Leigh Hospice.
The aims of the conference are to examine the management of the more difficult and challenging behaviours this group of patients may present; to explore dementia and delirium and to look at ways to manage these symptoms optimally. Closely linked with this are the legal aspects connected with this group of patients around mental capacity and deprivation of liberty safeguards and the potential complexities these can bring.
Good end of life care supports people and those important to them to have good quality of life, with pain and other symptoms well-managed up to, and including the last days of life (4). If, as professionals we are able to find out more about this specific area of palliative care, we can ensure that we are part of a team that identifies symptoms and how best those symptoms should be managed for that individual.
Confused about confusion in palliative care? takes place on 8 February 2017 at Leigh Sports Village, Leigh, Greater Manchester. Places are £90 if booked before 31 October, £120 after this date.
- Hospice Patient Alliance. Terminal agitation: a major distressful symptom in the dying. [Online] Available from: http://www.hospicepatients.org/terminal-agitation.html [Accessed 24 August 2016]
- Chand S. Dealing with the dying patient – treatment of terminal restlessness. The Pharmaceutical Journal. 2013; 290:382.
- Van der Steen et al. 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. 2014; 28(3): 197-209.
- Care Quality Commission. A Different Ending, addressing inequalities in end of life care. Care Quality Commission; 2016.