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Actively Dying: What Does it Mean?

You may have listened to the feature about our work on BBC Radio 4’s You and Yours programme, which aired on Friday 14th September, 2018 (listen again here).

A number of people who heard the interview have asked what I meant when I said that it can take people up to 3 days to “actively die”. I thought it might be useful to provide our supporters with some information about this phrase – clearly it is not one that everyone uses…

In our world, working alongside nursing & palliative care teams, when planning visits to patients who are in the last days and hours of their lives – we need to be able to be really clear with hospital staff which patients we are aiming to support – so this is the phrase that we use, and here is what it means.

What does ‘active dying’ mean?

Active dying is the final phase of the dying process. While the pre-active stage lasts for about three weeks, the active stage of dying lasts roughly three days. By definition, actively dying patients are very close to death, and exhibit many signs and symptoms of near-death. For instance, actively dying patients are often times unresponsive, and their blood pressure drops significantly.

Below is a list of some of the typical signs of active dying. While a patient may not experience all of the signs below, this list will help the patient’s loved ones and/or carers in recognising and defining active dying.

What are the symptoms of active dying?

The signs and symptoms of active dying include:

  • Long pauses in breathing; patients breathing patterns may also be very irregular
  • Patient is in a coma, or semi-coma, or cannot be awoken
  • Urinary and bowel incontinence and/or decrease in urine; urine may be discoloured
  • Blood pressure drops significantly
  • Patient’s skin changes colour (mottling) and their extremities may feel cold to the touch
  • Hallucinations, delirium, and agitation
  • Build-up of fluid in the lungs, which may cause unusual gurgling sounds (sometimes known as the death rattle)

Predicting active dying

While understanding what to expect by learning the signs and symptoms of active dying can be helpful, predicting active dying is still difficult. As stated previously, a patient may not exhibit all the signs above. In some cases the patient may actually state that he or she is dying. Often times the patient’s position will become rigid, indicating the time of death has approached.

As a loved one and/or carer, it’s important that you talk with the nurses and clinicians regarding the patient’s condition. They can help in identifying when someone is indeed actively dying, and explain additional ways to help you and your loved one.

Ref: Crossroads Hospice & Palliative Care website