Background: Virtually all dying patients go through a stereotypical pattern of symptoms and signs in the days prior to death. This trajectory is often referred to as “actively dying” or “imminent death”. Prompt recognition of this trajectory is key for clinicians to provide the most appropriate interventions for both the patient and family.
- Bed bound
- Loss of interest and/or ability to drink/eat
- Cognitive changes: increasing time spend sleeping and/or delirium (see Fast Fact #1)
- Further decline in mental status to obtundation (slow to arouse with stimulation; only brief periods of wakefulness)
- Death rattle – pooled oral sections that are not cleared due to loss of swallowing reflex
- Fever – usually from aspiration pneumonia
- Altered respiratory pattern – periods of apnea, hyperpnea, or irregular breathing
- Mottled extremities
2. Time Course The time to traverse the various stages can be less than 24 hours or as long as ~14 days. Patients who enter the trajectory who are nutritionally intact, with no infection (e.g. acute stroke), are apt to live longer than cachectic cancer patients
3. Common Family Concerns Family members present during the dying process often express the following concerns/questions. Clinicians can best help families by expecting these questions, providing education, reassurance, and responding to emotions (see also Fast Fact # 29; #149).
- Is my loved one in pain; how would we know?
- Aren’t we just starving my loved one to death?
- What should we expect; how will we know that time is short?
- Should I/we stay by the bedside?
- Can my loved one hear what we are saying?
- What do we do after death?
- Confirm treatment goals; recommend stopping treatments that are not contributing to comfort – pulse oximetry, IV hydration, antibiotics, finger sticks, etc.
- Communicate clearly to others what is going on. Write in progress notes: “patient is dying,” not “prognosis is poor”.
- Treat symptoms/signs as they arise: common among these are: oral secretions (see Fast Fact #109, #158); delirium (#1, 60); dyspnea (# 27), fever (#256) and pain (# 53, 54).
- Provide excellent mouth and skin care.
- Provide daily counseling and support to families.
- Rousseau P. Management of symptoms in the actively dying patient. In: Principles and Practice of Palliative Care and Supportive Oncology. Berger AM, Portenoy RK, and Weissman DE, eds. 2nd Edition. Philadelphia, PA: Lippincott, Williams, & Wilkins; 2002.
- Breitbart W, Alici Y. Agitation and delirium at the end of life. “We couldn’t manage him.” JAMA. 2008; 300(24):2898-2910.
Version History: This Fast Fact was originally edited by David E Weissman MD. 2nd Edition published July 2005. Current version re-copy-edited, with additional reference added, March 2009. 3rd Edition edited by Drew A Rosielle MD with additional material added November 2014.
Fast Facts and Concepts are edited by Sean Marks MD (Medical College of Wisconsin) and associate editor Drew A Rosielle MD (University of Minnesota Medical School), with the generous support of a volunteer peer-review editorial board, and are made available online by the Palliative Care Network of Wisconsin (PCNOW); the authors of each individual Fast Fact are solely responsible for that Fast Fact’s content. The full set of Fast Facts are available at Palliative Care Network of Wisconsin with contact information, and how to reference Fast Facts.
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