Table 18Summary of evidence: Theme 1 - physical changes – health care professionals experiences in recognising adults that are likely to be entering their final days of life or who may be recovering, and how the uncertainties about either situation can be dealt with

Study design and sampleDescriptors of themesQuality assessment
nDesignCriteriaRatingOverall
Sub-theme 1: Cardiovascular changes
52 interviews
2 Delphi studies
1 prospective cohort study
Two qualitative studies29,99 interviewed nursing staff with experience of caring for oncology patients in the last days of life. They described cardiovascular changes as important in recognising that people were entering this phase of their illness. Observations they identified included:
  • tachycardia
  • hypotension
  • pyrexia
  • increased respiratory rate
  • desaturation on pulse oximetry.
  • “you often see them (patients) being restless at night: they can hardly sleep due to this feeling of dyspnoea and their anxiety”
  • terminal secretions
  • periods of Cheyne stokes respiration.
These findings were reflected in 2 Delphi studies. One Delphi study54 asked a population of community hospice nursing staff (n=72) to identify relevant symptoms that enabled them to recognise when people with lung or gastrointestinal cancer were entering the last days of life. They reported the following as useful in recognising the last 3 days of life in these people which overlap with the qualitative findings:
  • Breathlessness at rest
  • mandibular breathing
  • terminal secretions
  • changes in respiratory rhythm
  • apnoea
  • increases of sputum
  • difficulty coughing up sputum
  • low oxygen saturations
  • forced breathing
A further Delphi study32 asked all healthcare professionals and lay members (n=252) to identify the symptoms they found relevant in recognising people in the last hours and days of life dying from all conditions. A number of the symptoms identified overlapped with those mentioned in the qualitative studies including:
  • death rattle
  • changed breathing rhythm
  • changes in breathing
  • changes in breathing pattern
  • cold extremities
A further prospective observational study13 asked doctors who had recognised people were entering the last 6 weeks of life which symptoms were most important in making this diagnosis (n=474). Increasing breathlessness was 1 of the top 4 reported symptoms rated in 21.3% of the cases included. This was then later analysed with data on the disease that the person died from. The study reported that increasing breathlessness was most useful in recognising people dying from diseases of the circulatory system.
Limitations of evidenceMinor limitationsMODERATE
Coherence of findingsCoherent
Applicability of evidenceApplicable
Theme saturation/sufficiencySaturated
Sub-theme 2: Deterioration of physical condition
52 interviews
2 Delphi studies
1 prospective cohort study
Two qualitative studies29,99 interviewed nursing staff with experience of caring for oncology patients in the last days of life. They described deterioration of physical condition as important in recognising that people were entering this phase of their illness. Signs and symptoms they identified as important included:
  • fatigue
  • lack of energy
  • extreme weakness
  • somnolence or difficulty sleeping
  • decreased level of consciousness
  • bed bound and loss of mobility
  • a glazed look in the eye
  • delirium
These findings were reflected in 2 Delphi studies. One Delphi study54 asked a population of community hospice nursing staff (n=72) to identify relevant symptoms that enabled them to recognise when people with lung or gastrointestinal cancer were entering the last days of life. They reported the following as useful in recognising the last 3 days of life in these people which overlap with the qualitative findings:
  • cannot move limbs independently
  • cannot open eyes to call
  • drowsy
  • confusion/delirium
  • coma
A further Delphi study32 asked all healthcare professionals and lay members (n=252) to identify the symptoms they found relevant in recognising people in the last hours and days of life dying from all conditions. A number of the symptoms identified overlapped with those mentioned in the qualitative studies including:
  • irreversible deterioration of consciousness
  • physical deterioration
  • restlessness
  • semi-comatose
  • organ failure
A further prospective observational study13 asked doctors who had recognised people were entering the last 6 weeks of life which symptoms were most important in making this diagnosis (n=474). Generalised weakness was 1 of the top 4 reported symptoms rated in 31.8% of the cases included. This was then later analysed with data on the disease that the person died from. The study reported that generalised weakness and tiredness were most useful in recognising people dying from malignant neoplasms.
Limitations of evidenceMinor limitationsMODERATE
Coherence of findingsCoherent
Applicability of evidenceApplicable
Theme saturation/sufficiencySaturated
Sub-theme 3: Reduced oral intake
52 interviews
2 Delphi studies
1 prospective cohort study
Two qualitative studies29,99 interviewed nursing staff with experience of caring for oncology patients in the last days of life. They described reduced oral intake as important in recognising that people were entering this phase of their illness. Signs and symptoms they identified as important included:
  • anorexia and weight loss
  • cachexia and diminished mimetic muscles
  • reduced oral intake
  • reduced sense of taste
  • reduced urine output or anuria
  • constipation/diarrhoea
  • problems with swallowing medication
These findings were reflected in 2 Delphi studies. One Delphi study54 asked a population of community hospice nursing staff (n=72) to identify relevant symptoms that enabled them to recognise when people with lung or gastrointestinal cancer were entering the last days of life. They reported the following as useful in recognising the last 3 days of life in these people which overlap with the qualitative findings:
  • anorexia
  • constipation/diarrhoea
  • dry mouth
A further Delphi study32 asked all healthcare professionals and lay members (n=252) to identify the symptoms they found relevant in recognising people in the last hours and days of life dying from all conditions. A number of the symptoms identified overlapped with those mentioned in the qualitative studies including:
  • no fluid or food intake
  • cannot drink
  • cheeks hollow and sunken
  • swallowing impossible
A further prospective observational study12 asked doctors who had recognised people were entering the last 6 weeks of life which symptoms were most important in making this diagnosis (n=474). Reduced oral and nutritional intake were 2 of the top 4 reported symptoms rated in the cases included, identified in 42.6% and 24.8% cases respectively. This finding was then later analysed with data on the disease that the person died from. The study reported that reduced oral and nutritional intake were most useful in recognising people dying from mental or behavioural disorders (predominantly dementia). It was also useful in recognising people with diseases of the circulatory system were in the last 6 weeks of life.
Limitations of evidenceMinor limitationsMODERATE
Coherence of findingsCoherent
Applicability of evidenceApplicable
Theme saturation/sufficiencySaturated
Sub theme 4: Worsening pain
22 interviewsTwo qualitative studies29,99 interviewed nursing staff with experience of caring for oncology patients in the last days of life. They described worsening pain as important in recognising that people were entering this phase of their illness. Observations they identified included:
  • ‘“sometimes the pain is increased and sometimes the pain is just gone”s’
  • less respondent to analgesia.
Limitations of evidenceMinor limitationsMODERATE
Coherence of findingsCoherent
Applicability of evidenceApplicable
Theme saturation/sufficiencySaturated
Sub theme 5: Skin changes
32 interview studies
1 Delphi study
Two qualitative studies29,99 interviewed nursing staff with experience of caring for oncology patients in the last days of life. They described skin changes as important in recognising that people were entering this phase of their illness. Observations they identified included:
  • skin mottling
  • ‘“it is so clear for us [nurses and colleagues] when we see a pointed nose”’
These findings were reflected in a Delphi12 study that asked all healthcare professionals and lay members (n=252) to identify the symptoms they found relevant in recognising people in the last hours and days of life dying from all conditions. A number of the symptoms identified overlapped with those mentioned in the qualitative studies including:
  • marble like skin
  • pale around the nose and mouth
Limitations of evidenceMinor limitationsMODERATE
Coherence of findingsCoherent
Applicability of evidenceApplicable
Theme saturation/sufficiencySaturated

From: 5, Recognising when a person may be in the last days of life

Cover of Care of Dying Adults in the Last Days of Life
Care of Dying Adults in the Last Days of Life.
NICE Guideline, No. 31.
National Clinical Guideline Centre (UK).
Copyright © 2015 National Clinical Guideline Centre.

NCBI Bookshelf. A service of the National Library of Medicine, National Institutes of Health.